I have been giving some thought to the future of #IBDHour which started way back in September 2016. It has got less regular, particularly since the arrival of baby Harris number 2.
When I started it it was the first UK based IBD Twitter chat, using the Twitter Hour format. We’ve had some great guest hosts and a range of topics.
I have tried to recruit a few volunteers to support it, but haven’t been able to secure regular support which is fine, and one of the hazards of chronic illness based activities.
I’m not able to sustain in it’s current format and regularity, so for now it is resting.
There are now a number of other Twitter based chats, including those hosted by The Bottom Line and Pelican Healthcare.
What I’d really like to do is a podcast, but that will need to wait until the baby is a bit bigger (and I learn how to podcast…)
Thanks for all the support over the life of #IBDHour – and keep an eye out for occasional specials!
The theme of this month’s #IBDHour chat tomorrow is set backs. It’s sometimes tricky to come up with a theme, but this month it came quite easily.
At the end of March, Crohn’s patient Dynamo released a video on Twitter revealing side effects he has had following treatment for a flare. The artritis he is suffering has meant he can’t shuffle cards – which is tricky for a magician!
On a smaller scale, over the Easter weekend I had to take a trip to BrisDoc when a small abscess burst out of my old fistula tract. It wasn’t too painful, but it needed antibiotics, which caused bag leaks. And I had to start wearing pads again to catch the leaky stuff. And for a few days I was worried that this could be the begininng of more issues, maybe more surgery if the abscess needed draining – it knocked me.
So tomorrow night we’ll be talking about set backs – what do they look like, what can you do, and how do you recover – I hope you can join us!
* Note – due to illness this IBDHour was rescheduled for May
Our chat this month is all about biologic treatment – here are the questions written Young Crohns our guest host this month.
Q1 Let’s start with some introductions! Please say hi – name, age, where you are and share your diagnosis if you wish. How has your day been? #IBDHour
Q2 What is your current treatment plan for your IBD? Does it involve medication? #IBDHour
Q3 Have you heard of biologics used for treating IBD? Have you ever tried any of them? #IBDHour
Q4 Have you had success with biologics? If not, what was the reasoning? #IBDHour
Q5 How do you feel about the risks these drugs bring with them? Do you think these medications are worthy of the risks? #IBDHour
Q6 If you’ve had side effects of these medications, have you received help with them from your IBD team? #IBDHour
Q7 Have you received more than one biologic? If so, how did that manifest itself and how did you feel? #IBDHour
Q8 Have you received other medications alongside a biologic? If so, what was it? How effective was it? #IBDHour
Q9 Finally; how do you find your treatment on biologics? Overall positive or some aspects of negative? If so, what is negative about it? #IBDHour
The final #IBDHour of 2017 will be a review of and we’ll be starting over on Twitter at 8pm on Thursday 21st December. Follow @IBDHour – here are the topics for discussion.
Q1 Let’s start with some introductions! Please say hi – name and where you are (even if your just following along) and share your diagnosis if you wish. And overall has 2017 been a good #IBD year for you? #IBDHour
Q2 What has been your personal highlight this year? #IBDHour
Q3 What has been your biggest IBD related challenge this year? #IBDhour
Q4 What has been the best IBD related campaign in 2017? #IBDHour
Q5 Most exciting treatment or research development for IBD? #IBDHour
Q6 Best blog post or social media campaign in 2017? #IBDHour
Q7 Most inspiring IBD-er of 2017? #IBDHour
Q8 Your hope for IBD in 2018? #IBDHour
On our first birthday Jenna Farmer is posing the questions as follow:
Q1 Please introduce yourself (you can share your diagnosis if you wish) and tell us how your summer was!
Q2 There are so many different diets out there, do you follow a strict diet and does it make a difference to your symptoms?
Q3 What are your ‘trigger foods’ that make your IBD worse?
Q4 On the end of the spectrum, what’s your go to food in a flare?
Q5 Do you think there is enough support with discussing diet and IBD-such as access to dieticians?
Q6 What’s your biggest worry about the diet you are on? E.g missing out on a certain food group or nutrient?
Q7 Low residue and low Fodmap diets are becoming popular-but have drawbacks. What are your experiences with them?
Here are the questions for tonight’s #IBDHour – follow on Twitter @IBDHour
Q1 Please introduce yourself (you can share your diagnosis if you wish) and say how you are today
Q2 Do you access any online groups for support – and what support do they offer?
Q3 Have you attended a real life group or event organised by an IBD organisation? If not, why not?
Q4 Is there a need for real life support groups? What would they look like?
Q5 @CrohnsColitisUK are clear they have local groups to raise awareness and fundraise, would you like them to offer more?
Q6 So much of life is online now – what is the benefit of real life contact?
Q7 What role should hospitals have in offering support? Should it just be to individuals or groups?
Here are the questions for this months IBD Hour!
Q1 Please introduce yourself (you can share your diagnosis if you wish) and share a positive from the last month
Q2 What has been your proudest achievement since your diagnosis?
Q3 IBD can be very negative – what do you do to stay positive?
Q4 When you are feeling down, have you got a ‘go to’ activity, food or drink to pick you up?
Q5 Have you got a person in your life who helps you remain positive?
Q6 For people who struggle to be positive, what advice would you give them?
Q7 Let’s finish with a positive thought, or something coming up for you in the next month
Do come and join us on Twitter at 8pm UK time on 15th June – search the #IBDHour