First #IBDHour – Great Success!

So last night was the first #IBDHour over on Twitter. After a slow start we had 5 or 6 people answering all the questions, and a few other lurkers liking and RTing.

If you missed it, you can see the whole thing through the magic of Storify here.

Next one is on 20th October. If you took part, let me know what you thought, and what topics you’d like to discuss in the future!

 

A busy week ahead

3dayssept

So I’ve just got back from a long weekend in the Cotswolds with some friends. It was nice, of not slightly washed out on Saturday which wiuth a two year old makes things a bit more challenging. I wasn’t able to use the hot tub (who knew they were not a great place for open wounds?) and I had a collosal bag leak at 4am this morning resulting in bed changing – I think it was a combination of beer, gin and too much Tzatiki…

Anyway, I am a dressing change first thing, then on Thursday night it is the first #IBDHour – I’ve done up some Hints, Tips & Advice for that is your coming along to take part! I’ve got  a few last things to prep, but I’m hoping it goes well – some of the big names in the IBD world have jumped on the RTing band wagon!

Last week I joined in with the latest #GetYourBellyOut picture sharing, and was really touched when people donated, and even got a few people doing there own belly selfies!

And finally, the voting stage has opened in the wego Health Activist Awards – you might remember me talking about my nomination a little while back. I am nominated in the ‘Best Kept Secret’ category, and would love it if you could endorse me (which means vote) – the top three endorsed nominees get through the the final, and it is going to be tough, but who knows – you have to start somewhere!

I hope you all have a great week, and maybe chat to some of you on Thursday at #IBDHour!

What’s this #IBDHour all about then?

iBD hour all info

So if you’ve been over on my Twitter recently then you might have spotted that I am launching #IBDHour – the first UK based Twitter Hour for Inflammatory Bowel Disease!

I am a massive fan of Twitter, and think it will be a great way to build the UK IBD community – as well as open it up to contributions from all over the world (where the time difference isn’t too much anyway.

If you’re not familiar with the concept of Twitter hours, then they go something like this. At a pre-arranged time, someone (the host) will start the hour off with some questions for discussion, and all the people participating use the hashtag – in this case #IBDHour – and answer the questions and then respond to other people.

The first event is going to be on 15th September at 8pm UK time, and the theme is going to be ‘Support’.

I’m really excited about it, and hope it will allow people from all over to have a virtual conversation.

If your interested in taking part, then follow @IBDHour on Twitter!

An American doctor experiences the NHS. Again.

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Another interesting take on the NHS by an American doctor.

Dr. Jen Gunter

WIth my cousin WIth my cousin

Two years ago I wrote about my experience in a London emergency department with my son, Victor. That post has since been viewed > 450,000 times. There are over 800 comments with no trolls (a feat unto itself) and almost all of them express love for the NHS.

I was in England again this week. And yes, I was back in an emergency department, but this time with my cousin (who is English).

This is what happened.

My cousin loves high heels. As a former model she makes walking in the highest of heels look easy. However, cobblestone streets have challenges not found on catwalks and so she twisted her ankle very badly. Despite ice and elevation there was significant swelling and bruising and she couldn’t put any weight on her foot. I suggested we call her doctor and explain the situation. I was worried about a…

View original post 1,414 more words

A surge in coverage

So in the last few weeks there has been a sudden surge of coverage of Inflammatory Bowel Disease (IBD) and related issues in the media.

Medals!

First off we had the news that two Olympic medal winners have IBD – both silver medalists in the pool. Siobhain-Marie O’Connor of Team GB has ulcerative colitis, and Kathleen Baker of the USA has Crohn’s Disease. They are not the first Olympians with IBD – Sir Steve Redgrave off of rowing is a CCUK ambassador, as is Ali Jawad, Paralympic Weight Lifter. There followed a couple of good articles over on The Mighty about how that might make other IBD patients feel – you can see those here and here.

For me, I say hats off to them. I don’t think I could ever have been an Olympic level athlete before I was ill, and certainly not whilst I have been ill, so it is testament to them that they have achieved so much whilst being ill – long may they have continued success. It also motivated me to finally go and do my first Park Run at the weekend – I walked it, but it felt good to finally be doing some exercise again.

Nights Out

unfortunately the next story that popped up was less positive. An IBD sufferer was on a night out, and had a sudden need to use a toilet. He went to the (open) McDonalds restaurant in Huddersfield to ask to use the toilet, showing his ‘Can’t Wait’ card to security and staff, but he was then asked to leave – you can read more here.

Now I don’t do night’s out very often, but it seems very sad to me that there was no flexibility for this young man to be able to use the facilities despite being able to evidence that he had a need. Perhaps the staff didn’t think that someone with such a requirement should be on a night out at all? I think that this is one of the areas that needs awareness to be raised – we might not be ill all the time, but we sometimes need a bit of extra help!

More Toilet News

Supermarket ASDA (favourite of my sister in law) have taken a great step forward with the signage on their disabled toilets – reminding people that not all disabilities are visible. This is great, although I’ve never had an issue myself, it took me a while to build up the confidence to use a disabled toilet without fear of the stare – and I think having a bag gives me an extra weapon to flash if challenged. I’ve needed them in particular in the last few years when I’ve been wearing inco pads – although not all disabled toilets have disposal bins. If I was in charge, all toilets would be accessible toilets with proper disposal bins. And all car parking spaces would be parent and child sized!

Down With the Kids

Our final piece of news relates to a perhaps ill-advised MTV blog about the movie Sausage Party in which it was suggested that a possible sequel – Colostomy Party – could be a hit. There was some real anger on the various Facebook groups and on Twitter from people with IBD and colostomies that once again these devices were being presented as comical, rather than life saving. This follows on, apparently, from recent references on Eastenders and Hollyoaks to them being something that only old people have, and resulted in a very positive piece in Metro by Hattie Gladwell.

There was a counter argument that it allows for some education and challenge (the saying being no publicity is bad publicity) and personally within the context of the blog I don’t think it the worst thing I have ever seen – however for some people it will reinforce their thinking, so lets hope they also see things like the Metro article.

If you spot any IBD news, do let me know by commenting or dropping me a Tweet @doobarz