About doobarz

You can view my blog at https://gutlessdick.com/ and follow me on Twitter @doobarz

A very lovely afternoon (apart from the roadworks)

On Saturday I journeyed to Birmingham for the Purple Wings Charity Conference. There was also a fundraising ball in the evening that I wasn’t attending, but I’ll come back to that later… If you have to go to Birmingham centre in the next little while I highly advise getting the train…

Purple Wings raises funds to award grants to IBD suffers and ostomates, to help them to regain their confidence, or fund some time with family after surgery. The conference was an opportunity to hear about the work of the last 12 months, launch the 2018 calendar, and hear from some individuals about their IBD and ostomy journeys.

There were also stalls from various stoma equipment manufacturers and distributors, bag cover creators and clothing companies, as well as the local Crohn’s & Colitis UK group and ia support branch.

The charity’s strap line  is ‘Recover, Adapt, Overcome’ and the founder, Lauren, is so driven to raise funds and help people to do just that. She was very humble throughout, giving the various speakers the lime light and a chance to share their experiences.

I didn’t take photos or video, and won’t try to capture the speakers words for you. Needless to say they were emotional and powerful, and I was sorry to miss the input from the evening speakers.

It was a bit like walking into Facebook come to life for a while, meeting and seeing people I have connected with or seen in various online groups, including former #IBDHour guest host Shell Lawes, the IBD & Ostomy Support Show girls (well three of them) James from The Toilet, Me & IBD and many others. It was nice to meet people in person rather than just online, and to be bale to have casual conversations about ostomy bag accessories!

You can find out more about the charity in this little video…

A couple of people asked me why I wasn’t staying for the evening ball, and I thought about it on the way home. It was partly about childcare, but mostly because when it was time to buy tickets and book rooms we just didn’t know what would be happening with my wound (18 months and counting). As it happens, it would have been possible wound wise, but it has prevented me doing so much – not because I am in pain, or in bed but because I might need professional intervention to do the dressing change. When things like that drag on and on (and on) you don’t realise how much it is holding you back – so that is the focus, get that wound healed (seeing consultant on Friday) – and then do the good stuff.

And maybe then next year I can share my story, and some poems at the Purple Wings Charity Ball…

 

#IBDHour July 2017 – Support Groups

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?

Walk It! Completed

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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.

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#IBDHour June 2017 – Posititivity

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

Small victories

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…

World IBD Day 2017

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

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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.