Raising money and awareness for St Marks Hospital Foundation

Have a night in for a good cause... get the boys round, get the girls round save some money on going out, extortionate drink prices, have a laugh at home,  and donate some of it for a worthy cause... 

My lifeline - A Line for life 

St Marks hospital gave me my lifeline, literally I have a line in my body for life that's keeps me alive.

Let me explain:

I have intestinal failure, as a result of CIIP ( Chronic Idiopathic Intestinal Pseudo-Obstruction), Gastroparesis, Small bowel dysmotility, Crohns Disease, Ehlers-Danlos Syndrome and  oesophageal dysmotility. To most people this probably sounds like a load of medical jargon, so to break it down it means that my stomach and bowel do not work as they should and I have problems swallowing.  My body does not know how to breakdown and digest food and drink, so when I eat it causes bloating, discomfort, intense pain, cramps, diahorrea/constipation and vomitting. This leads to malnourishment, dehydration and severe weight loss.

I went through this cycle of not tolerating food and drink for several years before being diagnosed, I reduced to 35kg, weak, frail & in a wheelchair,  a shadow of my former self, even developing osteoporosis ( the wearing away of the bones) & amenorrhoea (loss of menstruation) before being diagnosed.  A diagnosis of Ciip & Gastroparesis can be very difficult as Ciip is very rare, I spent from 2007 - 2010 being investigated, tests, procedures, endocopies, colonoscopies etc. I also had NG & NJ tubes (An NG/NJ tube is a small thin tube inserted through a persons nose, throat and down into the stomach/intestine for Enteral feeding) which unfortunately my body rejected, after 7 attempts they decided it was not the right answer.     January 2011 I was transfered to St Marks Hospital, Intestinal Failure Unit - Johnson Ward, under the care of the highly experienced & knowledgable Dr Simon Gabe Consultant Gastroenterologist, where a biopsy of my small bowel was done, finding a neuropathic pseudo obstruction and gastroparesis. I had a permanent hickman line inserted, I was told "my life woud never be the same again as there is no cure, advised to be nil by mouth & considered to be disabled".

The solution was TPN Total Parenteral Nutrition, basically being fed artifical nutrition through the tube that goes into the veins in my heart - my life saving line.   So since then every night I connect to my feed, which is made specificay for me and my bodys requirements which gives me fluids to stay hydrated, calories and all the nutrients/vitamins that my body needs to survive.

It has been a slow road, took me a good 2 years before managing to gain to some weight, but, now 2015 I can say that I feel the best I have done since I first got sick. I still have a way to go, at 35 years old I am 5"6 1/2 only 45kg but am alot better off than I was.  Life with a line is not easy, some days are a struggle, you just dont even feel like you have the strength to get up, you spend copious number of hours in the bathroom, constant vomitting, you have to be extremely careful with the things and people you come in contact with to avoid infection, which can be extremely dangerous. 

Often described as the "Invisible Illness"  as people may see you looking happy,  mobile and enjoying yourself but they don't see the extent of what people on TPN endure daily.

All that said and more I thank God everyday that I am alive, I live life to the fullest and make each day count.

I am so grateful, words can not express my appreciation to St Marks Hospital and Dr Simon Gabe & co, without them I would not be here to tell this story.

SO PLEASE SUPPORT ME & MY CAUSE TO RAISE MONEY FOR ST.  MARKS HOSPITAL FOUNDATION. THEIR STUDIES, TISSUE ENGINEERING, VITAL RESEARCH FOR BOWEL CANCER, CROHNS DISEASE & INTESTINAL FAILURE. 

LETS HELP MAKE A DIFFERENCE, HELP TO BEAT BOWEL DISEASE AND SAVE MORE LIVES!!!

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