Posted on 21 Apr 2020
On Monday 13th April, My IBD Care and Kay Greveson, IBD Nurse Specialist at the Royal Free London and founder of IBD Passport hosted a joint live Q&A session to discuss health and wellness in uncertain times.
We explored various topics surrounding how to cope during the current situation and how the new Lifestyle and Wellbeing Courses on My IBD Care could help enhance health and happiness for people living with IBD.
About IBD Passport: IBD Passport is an award-winning, non-profit website that aims to provide comprehensive, practical and reliable information on all aspects of travelling with Crohn’s Disease or Ulcerative Colitis.
If you were unable to tune in to the full 1-hour live, we’d like to share our highlights with you…
We caught up on what we’ve been up to!
Kay has not only been working hard to support patients in the UK during the current stress of the pandemic but has also been able to connect patients with necessary medication and medical advice stuck overseas. You can visit her website to find out more about the IBD Passport information and services by clicking here.
We recognised how in the early weeks of the pandemic, conflicting information was confusing for patients and hard to deal with. We noted the usefulness of the new decision tree that has been made by the British Society of Gastroenterology (BSG) which shows you what action you need to take depending on your medication, age and other risk factors.
Rachel, behavioural scientist at Ampersand, also explained how the new Lifestyle and Wellbeing Courses are a good way to stay supported, healthy and happy during this current time.
How can the courses help people living with Crohn’s or Colitis at this time?
Rachel: ‘It’s a time where health anxiety is very high. There are all these questions surrounding risk and what you can and cannot do. And also there’s just the kind of sheer pressure that healthcare professionals have on them. I think people are feeling a bit of a disconnect between themselves and their IBD team and perhaps not receiving that the same level of contact or response as they may have been having. And so it’s a nice time to access something that we’ve built with gastroenterologists and subject matter experts. It’s a nice tool to access at a time where some people might be feeling more anxious, or lonely or isolated’
‘Six months ago, we never thought the courses might be as of much value as they are today. People are in a place where it’s important to really look after your health and well being and also stay out of hospitals where there’s that another added risk of becoming infected.’
Kay: ‘It’s really good. So what kind of courses do you have on on the app? And what kind of things have you got the support patients?’
Rachel: ‘We have courses around sleep, medication adherence, and general well being. Those three categories contain a series of courses – some 28 days long, some are shorter and they’re all expert-led. They’re either video or audio-based. You can be led through a journey to help you create healthy habits and eventually embed these habits. So in the long run, you feel more energised, better in yourself with more control over your condition.’
Kay: ‘That sounds really good, actually, it’s really good that you’ve got the kind of real holistic way of looking at managing IBD. So not just looking at symptoms, and not just looking at medication, but looking at other factors.’
We answered your questions…
We received questions before the live Q&A, and answered them during!
What are you advising key workers with moderate risk to do?
Kay: ‘As an IBD nurse. Our advice line is pretty much gone through the roof with questions which is understandable because people are very concerned. There’s been a lot of confusing information out there because Crohn’s & Colitis UK and the British society of gastroenterology have produced IBD specific information and risk assessments. But then patients have been receiving text messages from the government telling them a completely different thing. So you can understand that it is quite confusing.’
‘What the British society of gastroenterology advises is that if you are moderate risk, you should still go to work if you kind of feel that you can. But with a social distancing, you should have your own workspace. It should be dedicated for you. There should be obviously a sign saying that only you, if possible, can work in a particular space and that is separate to other people by two metres. You should obviously have access to hand gels in the workspace and the workspace should be cleaned on a regular basis.’
You can find more information about the advice for key workers at moderate risk here.
Do you have any advice about sleep disruption as a result of steroids?
Kay: ‘It’s well recognised that if you’re taking corticosteroid treatments, especially on the higher doses, you will get insomnia, in addition to other things such as mood changes. The main thing from a nurse point of view is just to reassure patients that that only happens when you on the high doses. I guess things within the My BD care app such as the relaxation, mindfulness can help. The main thing that I reassure people is that it’s not permanent and as you reduce the dose down every week, those side effects do disappear. From your point of view, Rachel, what kind of support do you have on the app for patients?’
Rachel: ‘It’s an interesting one, the interaction between steroids and sleep can be quite problematic. We worked with Sophie Bostock, who applies principles of CBT for insomnia into the courses. What happens with steroids is that they mimic the actions of cortisol, which is the stress hormone. One of the effects of cortisol is to get the fight or flight stress response going – inducing stress. Cortisol also interferes with the body’s normal rhythm of melatonin, the hormone we need to prepare the body for sleep.’
‘What we have on the app, is advice for how to wind down and downregulate that stress like response that steroids can have. So we have mindful breathing, deep breathing and ratio breathing techniques that induce relaxation. These things may also help you deal with the side effects of steroids. What’s important is that we don’t want people developing a negative relationship towards their sleep and we’d like to help people find things that can help them during the time they are on steroids.’
Are probiotics like Optibac suitable for IBD patients, and can you take them during a flare-up?
Rachel: ‘I did reach out to a dietician that we tend to work with who took some time out to answer this question. He said that probiotics are relatively safe to take with inflammatory bowel disease, whether you’re in remission or flaring. And there isn’t any strong evidence to suggest that probiotics induce remission or prevent a flare-up. However many patients feel that probiotics benefit them and the advice is that they are safe to take.’
Kay: ‘There are lots and lots of different probiotics available. Lots of different brands. The main thing that I say to patients is to choose a brand that’s got the largest concentration of bacteria and the largest different strains of bacteria because there are lots and lots of different strains out there. I think there’s one called vivo mix, which is a good probiotic. And I think that’s got something like 450 billion different strains.’
I am interested in fatigue and remission. Is there generally a medical cause i.e anaemia?
Kay: ‘Fatigue is recognised as a common issue for people with a chronic disease such as Crohn’s or Colitis. The first thing we do is identify any medical reasons such as anaemia, low vitamin D, low zinc levels, a flare of your IBD (assessed via CRP blood levels and Faecal calprotectin or endoscopy). If all those are normal we then look at lifestyle factors such as stress, anxiety.’
Rachel: ‘Yeah it seems that about 40% of those in remission report that fatigue is difficult to manage. There are lots of things that could be contributing to fatigue – some medical reasons as Kay mentioned. On the new courses, there are lots of different ways you can try and improve your feelings of fatigue. Research into populations of people living with IBD has found that increasing exercise and improving medication habits could reduce feelings of fatigue. There’s also an interesting relationship between fatigue and mental wellbeing – anxiety and depression may be linked to higher fatigue. So by doing things to promote good mental health, you may end up feeling more energised.’