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?
So on Saturday I took part in Walk IT! – a sponsored walk raising funds for Crohn’s & Colitis UK. I – along with my wife, 3 year old son and my dad – walked 5 km around the centre of Bristol. It was a good day for walking – not too hot – although we did encounter some pretty steep hills (although that was mostly from where we parked the car to the start point – good old Apple maps…)
I did a Walk IT! last year too at Rutland Water which was lovely, but there is something extra about walking through a busy city centre on a Saturday for boosting the awareness raising potential. We even picked up a couple of donations as we wandered about.
The event was really well organised, marshalled and had a really nice feel to it. We have managed to raise over £400 for Crohn’s & Colitis UK which will be put to good use funding research and providing resources to IBD sufferers around the UK.
I thin k one of the highlights had to be all the volunteers gathering and cheering as we crossed the line – and then leting Jonah have another go because he liked being cheered so much!
There is still time to make a donation if you wish, by visiting the Justgiving Page.
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
Firstly, apologies for being a little quieter than I would have liked to be for World IBD Day. On Wednesday we got ‘the call’ from nursery – little man has spots, can you get them checked out. Turned out to be Chicken Pox II – The Return. So lots of stuff had to be moved and cancelled, and because the pox prevented him sleeping, we didn’t sleep either until last night. Hopefully he’ll be able to go back to nursery on Tuesday.
We have been very grateful for the help, support and advice of our GP surgery (urgent care nurse & GP), NHS 111 and out of hours GP and community pharmacist in trying to make him at least comfortable whilst this has been going on. When your child is having really high temperatures and symptoms which when Googled look terrible, it can be difficult to resist jumping in the car and heading for A&E – but I took my own advice from here and we managed it, and our anxieties without hours and hours of waiting.
Anyway, the new treatment that I was started on after my EUA seems to be working, and so yesterday for the first time in 4 years I was able to dispense with the little net pants I’ve used to hold my incontinence pads in place (see picture). I’m still wearing a small pad, but it’s of the type you can pick up in the supermarket rather than the full inco pad I had been wearing.
I have to admit it was a bit odd being less… restricted. However, for me it is a huge step forward to this wound being healed – less discharge so less need for a pad. And that is a step towards exercise and being able to be more active with my family and in life. The fact that I only have to have the wound checked twice a week, rather than dressed everyday has already made a huge difference to our lives – and so I am very much looking forward to it all being over!
So for now I just have to decide what to do with myc ollection of net pants. A ritual burning? Or perhaps I’ll put them on eBay – I understand there is a market for such things…
Happy World IBD Day everyone! It’s World IBD Day today (19th May) so you’ll hopefully see lots of purple and various media coverage about the conditions. I’m always happy to answer questions, but it is worth sharing these from Crohn’s & Colitis UK
Which annoyingly I don’t know how to embed…
Anyway, in July my family and I are goign to be raising money for Crohn’s & Colitis UK by taking part in there WalkIT event in Bristol – if you’d like to sponsor us, you can do so here. The charity produce great literature about IBD, as well as funding research into the conditiona nd treatments. They also campaign for more IBD Nurses and better singage on disable toilets, among other things.
On Thursday 11th May I was a guest on The IBD & Ostomy Support Show, and you can view the show on YouTube if you missed it.
It was great to be able to add a male perspective to some of the ‘Ask anything’ questions, as well as share my story, experiences of immunosuppressants and talk about IBDHour (which returns on Thursday by the way).
Do check out the video, and don’t forget to like, comment and subscribe to help the girls build the following, and check out their blogs and social media too!
The theme for this years Mental Health Awareness Week is ‘Surviving or Thriving?’.
I’ve done a really quick video talking about my experiences of low mood in the past – and whilst my IBD has been part of that, it hasn’t been the whole story…
So my advice would be, if you are feeling low, or that something isn’t right – talk to someone, and then get some support. The mental health aspects around IBD are not always at the forefront of our treatment plans, and surgery in particular can create or amplify issues – so don’t leave it unchecked and untreated.
The IBD & Ostomy Support Show has been going for about 7 weeks now – I wrote a quick review of the first episode. I am going to be a guest on the next episode this Thursday 11th May at 8pm – you can watch on YouTube.
I’ll be talking about IBDHour and my IBD journey, and the show has two themes – immunosuppressant and then an ‘Ask Anything’ section – you can ask questions in advance via the Facebook page and take part in the survey here.
I’m really looking forward to taking part, and hope you can check it out!
Today at work I had to drive to a meeting, and as I was driving my phone started going a bit crazy in my pocket. When I arrived it became apparent I had been featured (well my picture) on ITV daytime show Loose Women who this week launched a campaign about body image using the hashtag #MyBodyMyStory – fellow IBD & Ostomy blogger Shell Lawes (who is hosting #IBDHour this month) spotted this and encouraged those of us in the IBD and ostomy comunity to get invovled, so I sent a tweet last night and then forgot all about it.
So three minutes into todays show, this image graced the nations screens!
This particular picture is about two years old, and I’ve put on a bit of weight since then, but you can just about see my scar and obviously see my bag.
There are people with IBD and ostomies who would not be comfortable doing this, and there will be people who ‘don’t want to see it’, so by taking part hopefully it normalises ostomy bags – the show has apparently shown at least one ostomy image each day this week. And well done to the Loose Women for allowing so many people to share there bodies and there stories.
You can watch todays show for the next week on the ITV Hub.
Shell has been capturing the images of those people in the IBD & ostomy community and sharing them on her Instagram.