What people with IBD should know

I am often asked, “What would you tell someone recently diagnosed with IBD?” So, this is what I think you should know! Look out for clickable links in this blog, leading to more detailed information! For many, a definitive diagnosis is a massive relief after a long period of being unwell. This does not mean that acceptance is easy, after all, you have just been diagnosed with a chronic disease which has no cure. Do NOT panic, we’ve got this, life is not over! It is worth pointing out that no two IBD patients’ lives are the same. The disease does not always manifest in the same way, and the fact that a treatment works for one person does not mean it will work for another. This makes IBD notoriously difficult to treat. That said, some IBD patients may have one flare, find the right medication straight away and never have another, and that is fantastic! For the rest of us, being diagnosed with Crohn’s Disease or Ulcerative Colitis may mean some lifestyle changes and som

The time has come, to bid #GetYourBellyOut farewell

Yes, it is true, my time at #GetYourBellyOut HQ has come to an end and I guess I feel I owe some sort of explanation which is not easy, as I am sure you can understand that this was not a decision that’s been taken lightly.

#GetYourBellyOut will ALWAYS be a huge part of me, my baby if you will. #GetYourBellyOut runs so deep within me that I am pretty certain that if you slice off a limb, #GetYourBellyOut would run right the way through me like a stick of rock.

I will not be leaving the group and I will not stop supporting and taking part in takeovers etc. I LOVE the members and it’s thanks to the support that the campaign received so early on that I am still here today. #GetYourBellyOut saved me from myself, saved my life and saved my sanity. My inbox will always be open to supporters and IBD sufferers.

I guess it doesn’t take genius to figure out that things have not been right behind the scenes for a while. The honest truth of it is that the campaign took off so quickly that I found myself swept along in the excitement, working with 3 other ladies that I knew nothing about and that seemed to have the same ideals in terms of what we thought the IBD community needed, but it is no secret that we are four completely different people, with differing views, opinions and outlooks. We’re all so passionate about our own personal views and the campaign that it has meant we have often come to blows behind the scenes. For a long time things have been swept under the carpet and we have continued to work together for the good of that campaign and its members, believing at the time that we were all heading in the same direction.

From my personal perspective, and please remember that this is only my view on things, that we haven’t really ever recovered from the Pride of Britain fiasco. There was not one tiny part of me that enjoyed any of the entire process. From the filming to the awards, it was like hell on earth for me. I went ahead with it because I believed in the campaign and I believed that the coverage from receiving the award could gain us the exposure we so desperately needed to reach other sufferers who did not yet no we existed. No matter how tough things have got behind the scenes we have always shown a united front to the outside world but I feel like that wasn't the case here. I personally feel that since then, tension has been high. If the things that were said in the founder chat had been written in the group, I assure you we would all have been removed and banned a long time ago. Things get said in the heat of the moment that can never be taken back and I am a stubborn and probably pretty bitter human being, and I am not known for holding my tongue or forgiving and forgetting.

We’ve always had a vote on decisions and then gone with the majority which never went drastically wrong and seemed like a fair solution most of the time. I have reached a point now where I feel I am in a different place in regards to where I want the campaign to go and what I want it to achieve in comparison to the other founders. I find myself out voted on most things and it has become a struggle to go along with many recent decisions as it’s not the way that I envisaged the campaign or the group going forward.  It’s impossible to move forward when there’s no trust or respect for one another. Where there’s passion there’s fire, and my fire erupted.

In no way has my passion for raising awareness and funds for IBD been extinguished so I find myself considering what I can do next, to make a difference in the way I DO envisage and considering who would embark on this journey with me. I am now in a position where I am fortunate enough to know people within the IBD community that I know are on the same level. I am not willing to give up fighting for what I believe in just because I can no longer do it under the #GetYourBellyOut umbrella.

I thought long and hard about what I needed to do for the sake of my health, my sanity and my self-respect. I figured out where I want to go and who I want to get there with. I am a great believer in the fact that you have to make your own happiness, it’s not something that anyone can make for you and the only way you can do that is by being true to yourself. I need to fight for what I believe in WITH people that I believe in. I know there are many people who are going to feel like I have let them down and for that I am truly sorry. 

So what started as a few ideas, has been mulled over and adapted with some very special people and has now been developed in to an idea that we actually want to run with.

So what is next?

The glowing embers of my scorched heart have been reignited and like a phoenix from the sooty ashes has risen the #IBDSuperHeroes.

We are NOT in any way competing with #GetYourBellyOut, the funds raised will be going in a different direction and the group will be the heart of the project and the members the engine with which we will drive it forward. We aim to build a community, fighting together for one main goal - to find a cure for IBD. Money raised will fund research in to finding a cure for Inflammatory Bowel Disease. Group members will be involved every step of the way, from contributing to fundraising ideas and voting every quarter for the winner, to being involved with the planning, promotion and execution of the chosen idea.

Success will not be measured by numbers. The success of the #IBDSuperHeroes will be measured by the passion and belief that people have for the cause.

Active #GetYourBellyOut members will already be familiar with the team manning the group. We have Corinne Vanessa Burns, Lisa Cummins, Roger Pasfield, Stephen Gomm, AJ Mooney, Lee Kelly and as an added bonus, Rogers better half Kelly Pasfield who will be able to view things from a different perspective, the one of a partner to an IBD sufferer.  

If you want to know more, check out #IBDSuperHeroes