I have been desperate to share this news for a few months but had to wait for everything to be confirmed, but I have some HUGE news!
In February 2018 I will be traveling to Munich, Germany and co-hosting an amazing event to raise awareness and money for Crohns and Colitis UK and Lupus Foundation with none other than Hollywood actor Ian Harding from Pretty Little Liars!!
You can find more information and buy tickets here.
Just in case you can’t read German, here is a translation from the website:
“Autoimmune diseases Lupus and Crohn’s disease Crohn’s are a treacherous affair: often doesn’t show the suffering people go through, and yet a diagnosis has serious consequences for life.
To raise public awareness of the incurable disease, actor Ian Harding – coming known from the hit series of Pretty Little Liars and multiple winner of the teen choice awards – and the renowned British Blogger Sam Cleasby host an exclusive benefit concert in Munich.
Together with Cleasby, Harding leads through the program of the evening. Afterwards, you can meet Harding and Cleasby personally, when they will be signing event-designed T-Shirts, posters and flyers to all concertgoers.
The proceeds of the event go to the organisations Lupus Foundation of America and Crohn’s and Colitis UK, whose Ambassadors are Harding and Cleasby.
The Bands Splashing Hill, Liann and a third act which is yet to be announced provide the musical accompaniment. Supports the event is through the European Crohn’s and Colitis Foundation ECCS, by the Director of the Crohn’s and Colitis Centre in Munich, Prof. Dr. med. Thomas Ochsenkühn. This serves the medical backgrounds of the events, which will also be addressed in the context of a discussion panel with Cleasby and Harding.
Regular updates to the event can be found on the Facebook page of splashing Hill.”
I am over the moon and so proud to be part of this awesome event and can’t wait to team up with Ian and give a great show! It would be amazing to see some of my european readers over there, it’s going to be a blast!
I have done talks around the world, but this will be my first time speaking in Germany and so I am really excited to get to hang out and get to know some badasses from around Europe. I am always so proud to be asked to speak and this will be my first time hosting an event, so I just hope I do you all proud.
I hope to see you there!
I was very pleased to be asked to talk at the 12th congress of the European Crohns and Colitis Organisation in Barcelona. I will be attending next weekend and speaking with a panel of people from around the world about what life would be like if everyone in the world had IBD.
The Boehringer Ingelheim group asked me to be part of their innovative talk hoping to encourage a new way of thinking for medical professionals and pharmaceutical companies. They hope a discussion where the patient is put first will make people consider what it would be like if IBD wasn’t an illness but the norm.
What would treatment look like? How would buildings be designed? What would work, social and personal life be like for the world? With this thinking, perhaps patients with IBD will be more at the forefront of medical professionals minds when they are treating us.
I love public speaking, it gives me the opportunity to use my experiences to educate others and to offer support to members of the public. This event is a little different as it is aimed at medical professionals, I hope by taking part that I can help to shape the way doctors, surgeons, nurses and health professionals look at their future IBD patients. And for that I feel very grateful, honoured and proud.
#GetYourBellyOut is a great group who raise money for CCUK and awareness of life with Inflammatory Bowel Disease. To join in the campaign, all you have to do is upload a picture of your belly to your chosen social media accounts using the hashtag #GetYourBellyOut! You DO NOT have to have IBD to join in the campaign, just a willingness to help raise awareness!
You can also make a donation by sending the text IBDA99 and your donation amount E.g. ‘IBDA99 £3’ to 70070 (UK mobiles only) or you can donate to the JustGiving page online here. ALL donations go to Crohn’s and Colitis UK.
The event was held at the National Motorcycle museum in Solihull and it was an absolute blast! It was amazing to be in a room filled with so many inspirational and wonderful people, stories were shared and the drinks flowed as people talked about their own IBD journeys and the difference that the campaign has made to their life.
IBD is known as an embarrassing illness and it can be hard for people to speak out about their illnesses and how it affects their lives. So to be at this event where everyone is speaking openly (I was going to say ‘poo was on everyone’s lips’ but that sounds very, very wrong!) was just brilliant.
#GetYourBellyOut is doing amazing work and I was so chuffed to be invited, here are some of the photos from the night. I’d highly recommend you head over and check out their work. Someone asked me if I felt in competition with the group and with other IBD bloggers, and I can wholeheartedly say NO! I think we are all on the same team and we all do what we do to try and make the lives of other people better. I happily promote and share the work of other bloggers because I want to get everyone talking about their health, it is all about raising awareness and the more voices out there, the better.
When I was diagnosed with Ulcerative Colitis in 2003, there was so little support, the internet and social media have brought together so many people who are willing to speak out and to offer help to others and that is just so special. I started this blog in early 2013 when I couldn’t find much info and support in the UK, nowadays there are so many more blogs, websites and support groups and this can only be a good thing.
Let’s celebrate all those who work hard in tough circumstances to shout out, to stop poo being taboo, to raise awareness, raise money and work to find a cure. The Get Your Belly Out birthday ball was certainly a celebration of all those things.
I suppose it is only right that I get my belly out for this event, so here you go!
I do quite a bit of public speaking about life with IBD, stomas, jpouches and also self esteem and body confidence. I also volunteer with Crohns and Colitis UK and IA Support at events all over the UK. And the one thing that tends to be the same at these events is the lack of younger people attending and I think it is a real shame.
I understand that there is so much support online nowadays, and I also get that going to a support event in person can be a terrifying experience, but I do believe that person to person support, that real life connection is irreplaceable by chatting online.
When I had my first surgery and had my ostomy, it was suggested that I attended a Stoma Open Day at the local hospital to meet other local ostomates and see all the different products available to me. I went along and entered the room, so nervous that I was shaking. I nearly turned back a few times, the idea of going into a room of strangers was almost too much to bear.
I think I was the youngest person there by 20 years. That sucked.
As I walked around the stalls I was asked twice who I was with, the assumption being that I was there to support an older relative. It really dented my confidence and reasserted this awful feeling that I had an “old persons disease”.
It made me realise that it is a vicious circle. A younger person attends these events and feels out of place and so doesn’t return, meaning the next younger person who arrives feels exactly the same.
This is why I feel the need to speak out, make a call to arms, to ask all you younger folk (and by younger I mean under 50!) to try out an event local to you. It isn’t easy but I assure you that having attended many over the past two years, the feeling I walk away with after spending time with people who know exactly how you feel, after talking openly to people about things you may shy away from with your friends and family, that feeling is good. It’s inclusive, it’s helpful.
That feeling I had at the first event made me want to make things better for others. This blog, my talks, the things I discuss in the media is all part of a plan to raise awareness and make people be more understanding that chronic illness can strike at any age and that we need more support for all.
I will be at the Stoma Day this year as a volunteer for Crohns and Colitis UK South Yorkshire group, so if you are in the area, please come along, you are guaranteed to see at least one smily face and I would love to chat and help you make other connections. It is terribly advertised and so you may not even be aware of it.
It is on 5th October 2015 from 10am – 3pm at Hillsborough Arena in Sheffield and is organised by Sheffield Hospitals. If you have an ostomy and live in South Yorkshire, do consider coming along.
As I said I volunteer for the South Yorkshire group of Crohns and Colitis UK, we are a team of volunteers who offer support to sufferers and their families, do fundraising and generally getting the name of CCUK out there, especially in South Yorkshire. The team can take up as little or as much time as you’re able to, we’re grateful for any help. So if you feel like coming along, even just to see what we’re about, then we’d love to see you. We are having a meeting this Thursday 17th September in Sheffield, all are welcome if you are interested in helping out or hearing more. You can find the event here. We are ever so friendly and we are a laid back group so please think about getting involved.
I do a lot of this stuff because I really do care, I want to make a difference. I honestly believe that through speaking out and talking at events, we can help all others who follow in our path. What we go through as people with IBD is tough, we fight an illness that tries to ruin every part of our lives and the worst thing is the strangling silence that wraps itself around our throats and stops us speaking out. Meeting others who are going through the same thing makes life a little easier, it stops that feeling of isolation, of feeling of being alone.
So think about it, have a look at local events to you and consider attending just one. If we all do that, imagine the army of support we could create!
Helping others and helping yourself. Get involved.
I will be talking at the Pelican Live Your Life roadshow in Preston on Sunday 5th July talking ostomies and body image.
At Bartle Hall from 11-3, Come along and meet the Pelican team, chat to nurses, and attend some great talks. It’s a must for people with an ostomy, carers, family and friends. I’ll be doing my talk once in the morning and once in the afternoon so if you’re near Preston, do call in.
Feel free to drop by with your family and friends, anytime between 11am and 3pm. If you have any queries, or would like to confirm your attendance, you can contact:
Email – ku.oc1561047642.erac1561047642htlae1561047642hnaci1561047642lep@g1561047642nitek1561047642ram1561047642
Freephone – 0800 318 282
The guys at Pelican are super friendly and so easy to talk to, it’s well worth getting in touch.
I am involved in the Crohns and Colitis UK South Yorkshire group and in October this year, we are holding a super exciting dinner dance (ticket info available soon) at Oakwell Stadium in Barnsley. There will be live music, a DJ, guest speakers, footballers and a raffle (plus extra things to be announced closer to the time).
If any of my amazing followers can help with either free stuff, raffle prizes or donation of time, that would be AMAZING!!
Crohn’s and Colitis UK are a charity close to my heart and we want to raise a lot of money for research and support but also allow people to make connections with others in South Yorkshire and to raise awareness of Crohns and Colitis.
The volunteer group is entirely run by people with IBD or their family members and so as you can imagine, it is difficult when we are all dealing with our own health issues, but we do it to make a difference, so PLEASE get involved.
If anyone can help or donate a prize, then please get in touch.
I did a talk at the Crohns and Colitis UK South Yorkshire Autumn lecture, I joined Mr Brown, consultant and surgeon at Sheffield Hallamshire and Northern General hospitals and we gave a patient/surgeon take on Ulcerative Colitis, surgery and treatment. I had a brilliant time, the talk was filmed and I will share that with you when I get hold of the final cut.
I received this from Sandra Capewell, Chair of the South Yorkshire Crohns and Colitis group and was blown away. I work hard to make a difference to the lives of people with IBD and to hear that I am helping just means so much.