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 am really proud to be a volunteer for the South Yorkshire group of Crohns and Colitis UK.
We are a small team who all have either Crohns or ulcerative colitis and we raise awareness, raise money and offer support to local people with IBD in our area.
A few weeks ago we had a race night in Hillsborough to raise money and have a great time. We were over the moon to raise over £1000!!
We were thrilled to get into the Sheffield Star too.
We put on coffee mornings, attend events and put on our own and everyone is welcome.
Our next event is this Saturday at the medical education centre at Northern General hospital in Sheffield from 1-4pm. I will be doing a talk about the emotional and mental health aspects of IBD and there will also be talks by my wonderful surgeon Mr Brown and an IBD nurse.
Everyone is welcome, please do share the event and come along if you can.
If you’re a Crohns and Colitis UK member and get the Connect magazine then you may recognise the folk on the cover!
Thanks to the guys at Crohns and Colitis UK for featuring us and for such a lovely feature.
Oh blimey! I am so overwhelmed and proud to let you know that I am now one of Crohns and Colitis UK’s Community Champions.
“Crohn’s and Colitis UK’s close community is our biggest strength and we would not be able to continue our fight against Inflammatory Bowel Disease (IBD) without the support of those who are making a huge difference to support the charity and the wider IBD community.
We are honoured to recognise several dedicated supporters as Community Champions, because of their dedication, passion and exceptional efforts. Community Champions do incredible work across the UK, they are campaigning to raise awareness in the media, striving to resolve stigma associated with bowel conditions, raising money that funds research, support lines and much more as well as volunteering to support their local community.”
I became a member of Crohns and Colitis UK shortly after I was diagnosed with Ulcerative Colitis. I had never even heard of the illness before the doctors told me I had it. At first I was just relieved that I didn’t have bowel cancer, but then as I read up on it, I got pretty scared. I searched the internet for answers and found some scary stories that made me feel worse than before, and then I found CCUK.
It was such a relief to find a website with all the information and support that I needed in one place, I used the forums and read up as much as I could. Then when I had my surgery to remove my colon in 2013, I rediscovered the site and it was even better, there was a lot of information but it was easy to read and access.
Crohns and Colitis UK have done so much for me and I knew that I wanted to give something back, I am a member and would recommend it to anyone who has IBD or is a carer or family member, you can join from £15 a year, get a magazine, can’t wait card and a ton of support and your money goes to research, support and information, if you join in October, you get a free RADAR key).
Since then I have done fund raisers, joined my local branch and raised awareness of this amazing charity and I will always continue to do so. To be made one of their community champions is a very proud day for me.
And I am in such amazing company too! Ellie Pugh is just 11 years old and has raised so much money for CCUK after being diagnosed herself, what an inspiration! My lovely friend Charlotte Guinea, who I met through our shared love of stopping poo being a taboo is also one of the Community Champions and of course, the wonderful Get Your Belly Out team. Take a look at all the champions here.
I don’t do what I do for recognition, I do it because this is my life, I know how it feels to have IBD and face the uncertainties, fear and struggles of life with a lifelong, chronic illness. I share my story because in my darkest days, I wish I could have read about someone else’s journey to give me hope that there is life after an IBD diagnosis. But I am extremely proud, humbled and honoured to be part of something so special.
Thank you Crohns and Colitis UK, thank you
#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!
Last year, The Plug nightclub in Sheffield got in touch with me, they’d seen my blog and the work I do and wanted to help.
They choose charities and donate the income from their guest list donations. So basically, if you are put on the guest list to see a band at The Plug, you are asked on the door for a small donation. Seems fair if you’re blagging your way in for nothing!
Anyway, they asked me who I’d like to donate to and I, of course, chose Crohns and Colitis UK. I volunteer for the South Yorkshire branch of CCUK and so the money will go directly to the people of South Yorkshire which is just awesome!
I would like to thank The Plug for an astounding £732.62! This money will make a big difference and I am super proud of being part of this.
If you live in South Yorkshire and either have Crohns or Ulcerative Colitis, or if you have a close family member or friend who does and you want support and information, then please do get in touch, attend the coffee mornings and get involved!
Back in September, I was invited to a dinner dance arranged by Stephanie Donnelly, a woman who set up a support group for people who have or are about to have stoma surgery. It was in aid of Crohns and Colitis UK and Breakaway and I was asked to be part of their fashion show at the Midland Hotel in Bradford.
It was a great event and they raised a lot of money for two great causes, it was an honour to be part of the day. Sometimes, being an IBD blogger can be lonely, you sit alone writing for a huge audience but don’t actually get to spend time with others and so attending events like this is a great joy.
I have never done a catwalk (there doesnt seem to be much call for a size 16 woman covered in scars to model!!) before but it was tons of fun and fantastic to be part of a runway filled with inspiring women who have or have had an ostomy. There was a Photo Booth and a swing band called the 309’s, all in all it was a fantastic night!
Thanks to Timm from The Picture Foundry for being my wonderful date and for photographing me in these shots.
On 4th November this year, I had the honour and privilege of going to Parliament with Crohns and Colitis UK to speak to MP’s and Peers about life with IBD. It was a fantastic experience that I will never forget and I hope to repeat again.
Raising awareness and being a health advocate is everything to me and my ability to share my thoughts through this blog, writing for other publications, writing my book and speaking at events all over the UK is something I am hugely passionate about. I LOVE what I do and I am so proud of my work. But going to speak to the people in power, those who run this country, who I can educate to then help thousands of their own constituents is just amazing.
I love the work of Crohns and Colitis UK and I am so proud to volunteer for them both on a local and national level and it was just a fantastic event to be part of.
I was quite unwell during the lead up to this event and on the day I was struggling with pouchitis but decided to push through as it was so important to me. I met the amazing Carrie and David Grant who are ambassadors of the charity and got to hang out with fellow IBD activists Charlotte Guinea and the Get Your Belly Out team. What was very interested and helpful was to speak to all these people about my own personal experiences and learn about theirs. Both Carrie and Charlotte also discussed how they were currently unwell and we had a good old whinge about how IBD sucks.
I spoke to many MPs from all over the country and was over the moon to hear that over 80 MPs and peers came through the doors to learn more about Crohns and Colitis Care; the newest information pack produced by CCUK to help patients understand what they have, what they are entitled to and how to get the best care.
The people I spoke to seemed genuinely interested and cared about their constituents, they asked many questions and we discussed how they can help. A big thank you to Sheffield MP Harry Harpham, who has been in touch through email and though he couldn’t attend on the day as he had previous engagements in Sheffield, sent his parliamentary researcher to find out more.
What struck me was the motivation and strength of the volunteers and ambassadors, as we talked about our current illnesses, medication and treatments, I was very aware of the sheer heroism it takes to attend these events and raise awareness when you feel so dreadfully ill. Ironically all three of us (Carrie, Charlotte and myself) all ended up back in hospital within a week of this event which gives you an idea of just how poorly we are. But when you look at these photos, it is easy to just see 3 smiling women. The reality is that we are 3 women who despite our illness, keep striving to make the world an easier place for those who follow in our health footsteps.
I hope that all those MPs and Peers really took on board what I, and other ambassadors, shared with them. I hope they learnt something and will know better how to help and support their own constituents and how to signpost them to Crohns and Colitis UK.
I know that on that day I carried in my heart the voices of all of you lot, your words of pain and struggle rang in my ears as I spoke to MPs, your concerns, your anger, your needs were voiced through my mouth and I hope I did you all proud as an advocate for all those with Crohns and Colitis.
A few months after the birth of my second child, I began to notice blood in the toilet after I had opened by bowels, I ignored it for a while and then found I was going to the loo more and more. One morning I woke to a lot of blood and mucus in my pants, I ran to the toilet and it was like a massacre! I went to A&E convinced that something terrible was happening, I honestly thought I was dying. Doctors really brushed me off, suggesting I had piles and with an irritated tone told me that this was neither an accident nor an emergency and that I should see my GP.
I left shame faced and embarrassed, visited the GP who agreed that it was “just piles” and told me to use over the counter treatments. The next day I collapsed at home. I was taken in an ambulance to hospital where after admitting me and doing some tests, they diagnosed me with Ulcerative Colitis.
Around 300,000 people in the UK suffer from Crohn’s or Ulcerative Colitis and figures suggest the disease is on the increase. According to the Health and Social Care Information Centre, the number of 16- to 29-year-olds receiving hospital treatment for the condition has risen 300% in the past 10 years, to almost 20,000.
So why is it that doctors are struggling to diagnose IBD?
I suppose GP’s and doctors see a lot of abdo pain and diarrhoea and they can’t assume it is always down to Inflammatory Bowel Disease. IBS (Irritable Bowel Syndrome) is very common with some stats suggesting 15-25% of the population having some symptoms, this along with stomach bugs, food poisoning and problems like haemorrhoids could be throwing them off course, but it is the patient that suffers when they don’t get diagnosed quickly. It is a problem I hear a lot, many people get in touch and tell me that they were very ill before they got the correct diagnosis.
The difficulty also lies in the embarrassment factor, people don’t like to see their doctors when it comes to matters of the bum, especially if that bum has diarrhoea, incontinence, blood and mucus loss. It takes a lot to speak out about these problems and then if you either aren’t believed or are misdiagnosed then it takes courage to go back and ask for a second opinion!
Treatment for IBD sometimes requires a trial and error approach, depending on the severity of the flare up and how the patient responds, it can take some time to get the balance of medication right. For 20% of Colitis patients and 60-75% of Crohns patients, surgery will become necessary and sometimes when either symptoms have been ignored or the patient has been misdiagnosed, the disease has progressed so far by the time of diagnosis that surgery is the only option.
That is why I work hard to #StopPooBeingTaboo to ensure that people are aware of the symptoms and have the courage and strength to speak out and get the best treatment for them as soon as possible. When I was diagnosed, I had never heard of Ulcerative Colitis and it was an absolute shock. If I had known more then perhaps I would have spoken out sooner and been more confident in asking for a second or third opinion when my condition was brushed off twice!
I truly believe that the more we all speak out, the easier we make it for those who follow in our path. Believe it or not, I do feel embarrassed sometimes when I tell you all about my incontinence accidents, or when I explain in detail about my surgeries! I do feel that hot faced shame when I think about everyone reading my words, but I do it to make a difference. I wish I could have read the truth from someone else when I was diagnosed and so I hope that some good can come from my illness.
Crohns and Colitis UK are a national charity who offer tons of support and advice, if you have been diagnosed they should be a port of call to educate yourself and for any support you need. They say “IBD symptoms vary from person to person – and usually over time. IBD is a chronic (long term) disease and if you have IBD you will probably have periods of good health (remission) and then relapses or ‘flare-ups’ when the symptoms get worse.
The main symptoms are:
- abdominal pain
- diarrhoea (sometimes mixed with blood, especially in Ulcerative Colitis)
- tiredness and fatigue
- loss of appetite
- weight loss
- abscesses and fistulas (in Crohn’s)
- swollen joints, mouth ulcers and eye problems”
If you are having any of these symptoms and are concerned, you should see your GP. If you are have a few of these symptoms and not being heard, then ask for a send opinion, print out info from CCUK and take control of your own health.
Doctors are only human and are not infallible, this isn’t about slating them but about accepting that perhaps diagnosis rates aren’t as good as they can be and so as patients we must be our own advocates, make sure we are informed, educated and brave enough to speak out.