Cost of Leaky Gut to the NHS

gastro

3 steps forward, 2 steps back…  To me, this summarises my life quite well!  I mean, for roughly 20 years now, there’s been something there within me that’s been not entirely happy, not that I was aware nor interested enough about health in the early days to identify it!  

My first conscious memory that something might not be quite right with me was aged about 16 I think, or thereabouts.  Sat around with family at Christmas, have a cheeky cider, or 2!  My mum noticed my face was a little red and to be honest, I did feel a little flush.  I really didn’t think about it at the time.  So, many random evenings and nights went by over the coming years where, although I didn’t need to take anything daily to help band aid my issues, there was clearly something about alcohol exclusively, at first, that didn’t agree with me.  And that’s how it started, only when I drank alcohol would I notice it, and being young and stupid, I wasn’t bothered enough about it to change my attitude towards alcohol, because it was fun!  Over the years this feeling of a pulsating heart, and in later times my stomach, became less isolated to alcohol, and equally about food, too. 

 

Looking back now, it’s clear I had intolerances which if I had known the signs earlier , I could probably have avoided the worst of my current issues.  Intolerances, normal stuff for many I appreciate, however, as it processed through my body, I could feel my heart more than normal, effectively a laboured heartbeat, not a fast heart rate but a laboured one.  So, when explaining this to a doctor, you can see why the normal symptoms of bloating, cramping, diarrhoea etc did not lead a professional to query basic intolerances, and why each went down the path/s I explain below.

Now, an intolerance is something millions of us suffer with, but when you’re young and not prepared to deal with a dodgy bod, or more specifically a dodgy gut; you’re ill-equipped to deal with something like this for sure!  Especially when you realise the condition is considered a “proposed condition”.  See www.nhs.uk/conditions/leaky-gut-syndrome/

To give you an idea of just how unequipped the NHS is to deal with symptoms such as mine, your health saviours remember, I was subsequently sent on a roller coaster ride of the below tests & procedures over a period of roughly 8-9 years which demonstrates not just how little the NHS is aware of Leaky Gut, but how expensive patients with gastro issues are for the NHS!  Scary amount of money and worst of all, the following procedures left me with no diagnosis at all!

 

2008 – Doctor appointments explaining rough Gastro issues

2008 – Test for H. pylori, GERD

2008 – Doctor Appointments, complaints of tiredness/ dizziness – puzzled doctors

2009 – Tests for B12, Anaemia – confirmed mildly deficient for B12 absorption

A year or two rolls by various appointments wasting doctors time, I am still not prompted to look at food intolerances, let alone a food diary!

2011 – Basic blood tests run for all sorts of things I don’t understand including cancer proteins

2011 – My upper abdomen discomfort / thumping chest I am booked for ECG – Incorrect detection of heart abnormalities!  Sent via ambulance to hospital to find false alarm no heart attack.  Suspected pericarditis tested, negative. Sent home with suggested Anxiety.

2011 – Back to the doctors, Cardiac tests begin!

2012 – 24-hour ECG

2012 – Stress Test

2012 – echocardiogram

2012 – discharged from outpatient Cardiology as negative.

2013 – I am offered Lansoprazole which turns my hands flaky (yuck!) settling for omeprazole for stomach acid, and propranolol for my thumping heart when I eat.

2013 – Become unwell with temperature – suspected appendicitis – negative.  3 days of hospitalisation various tests and CT’s, high calprotectin levels/ high inflammation levels in stool samples.  IBD confirmed.

2014 – sent to Gastroenterology as outpatient.

2014 – Endoscopy – confirmed mild gastritis

2014 – Colonoscopy – negative

2015 – various blood tests, adrenals, polyps, Celiac disease, Crohns disease – all negative!

2015 – Endoscopy for 12 samples from various parts of the stomach and bowel lining, Painful!

2015 – video Capsule endoscopy – largely normal other than inflammation of the ileus

2016 MRI – again negative.

2016 – discharged from Gastroenterology as nothing clearly identified other than high remaining calprotectin levels.

BY now, I have been on my own journey of discovery, given the time that has passed now!  So, I am beyond hopefully for a diagnosis, and starting to understand that a diet led plan designed by someone who is a nutritionist is probably the best port of call.  To entertain the doctors, I agreed to be an outpatient to the Thoracic department.

2016 – Sent to Thoracic as outpatient – After explanation of symptoms, doctor agrees this is very unlikely to belong to the field of Thoracics however, given I get breathless with the pulsating upper GI area, several tests are conducted.

2017 – Walking tests, Breath Tests inhale/exhale, etc etc… you get the idea!

The above catalogue of procedures is conclusive in my view – I have cost the NHS significant money and resources trying the find the reasons for my issues, to no avail.   I have made a conservative effort here, and this does not include doctor appointments costing approx. £30 a time in the UK to the NHS… I have conservatively cost the NHS in procedures and tests alone, £12,500. Adding in the time taken by professionals, and doctors time, I think we can safely triple this figure.

The question is, how many people are out there like me costing the NHS time and money with this condition.  Waiting times for a UK citizen under the NHS for gastro-related or any other non-urgent investigations is 18 weeks.  Within the Gastroenterology department, I personally found waiting times consistently longer than this; with the needed knowledge through investment made within this field, I believe waiting times could be reduced significantly, ultimately reducing the burden of people like me to the NHS!

I would be intrigued to hear your stories if anyone out there would like to share theirs.  What are your symptoms, how long has your condition been under investigation with your doctors and specialists?  I think a movement for recognition of ‘leaky gut’ is badly needed, then we can look push for adequate investment ring fenced to understand/treat people with it.  Time will tell if people’s stories are enough for the people with the power to listen.

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