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

A book to remember

I bought the Kindle version of Matthew Williamson's book, 'From the inside out'. I fully intend to buy a paperback version before our meet (which WILL happen at some point in the not so distant future I am sure) to have signed by the man himself! 

As I lay here in the dark at 5.30am coming to the end of the book I am crying. I am crying because something amazing happened, because we did enough for someone to be mentioned in his book!

Matt has truly outdone himself here. I am probably biased as I already have a great fondness for him and in all honesty, a book full of IBD diaries is unlikely to be your cup of tea unless you suffer with some form of bowel condition yourself...

But isn't that always the case? Does anyone that isn't directly affected by IBD really give a fuck about the #GetYourBellyOut campaign? 

In short, no they don't, but they will because I will not stop until they do! 

So, back to Matthew and his book (it feels more like our book). Matthew tells his own story which is broken up by diaries from other IBD sufferers, including #GetYourBellyOut co-founders, Welsh UCer Victoria Marie and our loveable, Crohnie Manc, Lorna Haymes. I love the way Matthew writes, it's honest and funny and I feel you often see glimpses of his true character. He describes his ten year long battle and his thought processes throughout. To me this is what is most important. We can all tell our physical story but putting pen to paper to declare your 'thoughts' is a different matter.

My physical story is as follows:
Diagnosed with Ulcerative Colitis aged 19 in 2007. Subtotal colectomy (colon removed) & temp ileostomy within a week.
Jpouch creation & loop ileostomy in 2008.
Take down surgery (reversal) in 2009.
Chronic pouchitis, cuffitis, strictures & suspected Crohn’s.
Resection, pouch revision and temp ileostomy in 2014.
Medications tried: Asacol, Mesalazine, Prednisone, Ad cal, Budesonide/Entecort, Mesalazine enemas, Azathioprine, VSL#3, Metronidazole; Ciprofloxacin, Codeine, Tramadol, Oramorph, Fentanyl & Butrans Patches,
My emotional journey? My thoughts? My feelings? Well your guess is as good as mine! (Or so I'll have you believe). I write a few things in blogs when I feel I can. I wish I could share everything but unfortunately, that's not a place I want to take myself back to. Memories lay buried in a part of my brain that I do not wish to access. 
I do feel there are things that Matthew is not telling us. Maybe he didn't want to access ALL of his memories either and I certainly can't blame him for that but what he has shared bought tears to my eyes and a warmth to my heart. 
I have absolutely no idea whether #GetYourBellyOut is here to stay or whether it will fade away and I'll look back at 80 years old and think 'That was a good year'. 
What I do know is that there will be a box. A box labelled 'Look what we did'. A box that contains a web domain certificate, one of each of our merchandise and a book. A book to remember xxx