In December 2013 I was in isolation in a side room in St Marks with a broken TV and nothing to do to occupy my time. And as a result 'More Than Just A Bag Lady' was born.
I thought long and hard about what to call the blog and thought that this was quite fitting. I wanted the blog to detail my medical journey but also to highlight that I am just a normal person. I'm a wife, a mother, a daughter, a sister, a friend and I am all of those things with or without a Stoma bag.
Initially I wrote the blog to update friends and family so that I wouldn't have to keep answering the question 'how are you?' with the same answer for the 100th time. Please don't get me wrong. It's not that I'm ungrateful for people asking and caring but sometimes it can be quite exhausting (and emotional) answering that same question and giving the same answer time and time again.
What I hadn't expected though when I started the blog was the praise I've received for my writing style; I just tell it how it is. No frills attached. Poo and all. Many people have said that I've made them laugh out loud one minute but then they've been crying the next. If I can manage to do that with a few words on a page then I'm proud that I'm connecting with people and that you, as the reader are sharing in the highs and lows of the saga that is my life.
I've made contact with many people who have read the blog and messaged me to say 'that happened to me too' or 'I thought I was the only one going through that'. I've also had people tell me, including long term friends, that they now understand better what I'm going through and that they never realised before quite how difficult everyday life can be for someone affected with colitis and a Stoma.
I'm pleased that my blog might be making just a little bit of a difference in the fight for bowel diseases and disorders such as colitis and crohns to be talked about publicly and that it's not something to be ashamed of.
Do you know that since starting this blog there have been over 13,000 page views, with these being the most read posts. Have you read them all?
I have readers from all over the world too which is something that surprises me, especially the countries like Nigeria or Serbia where I have no friends or relatives living there.
I know my story is very much the exception and not the norm and that thousands of people diagnosed with these diseases will not have to have a Stoma or undergo the barrage of tests or endure the hospital stays that I have and that's great. It means that all the research into the diseases and drugs is making a difference and helping lots of people live a normal life after they've received a diagnosis.
But there are still quite a few 'exceptions' like me and I've met lots of them along the way, especially in my stays on the Intestinal Failure Unit at St Marks, some of whom you will have read about in the blog but others that you won't.
The IFU unit is unique. It is full of people just like me, struggling to live a normal life while our bodies are making that practically an impossibility. We find solace that we are all in the same boat, each one of us with a story to tell and in IFU there is always someone to listen.
But there are only 20 beds on the ward and always 10 or more people on the waiting list to come in, either from home or from other hospitals that just don't know what to do with them anymore.
And there is a lot more research to be done to discover the causes of these diseases, the best treatments and the link between 'the big brain and the little brain' which is how St Marks refer to the relationship of mental health and the bowels.
I'm proud to say that my sister is swimming the Great London Swim, a mile in the Thames river, later this year in aid of St Marks Hospital. She's not a natural swimmer lets say and when she started off last year she could only just manage to swim widths let alone a mile in open water.
She has a blog charting her journey: http://swimwin.blogspot.co.uk
(we love a good blog in our family) but don't worry, she doesn't update every day like me so it's less demanding on your time to follow her blog than it is mine 😉
She also has a Just Giving page set up, so if you love reading either of our blogs and have even £1 to spare then please donate here:
If everyone who liked my Facebook page gave £1 then that would be £188. If everyone gave £5, it would be £940. If they dug really deep and gave £10 it would be nearly £2000! Imagine that! And with gift aid...well you get the picture!!
NB x
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