Appendices

The Author's Experience

I must have been about 4 years old when my mother took me to the doctor because I was a "mouth breather" - my nose was constantly blocked. The doctor said I had childhood catarrh and would grow out of it.
It wasn't until 50 years later, I found out it was just one of the many symptoms of the reflux problems I have had to deal with all my life.

All through my life I had problems I now know to have been due to reflux.
I have always had catarrhal problems or rhinitis. I've been tested negative for all known allergens.
When I was six, I had my tonsils and adenoids removed as they thought it would help.
As a boy I had my ears syringed each week - and carry the scars to this day.
I always had a very poor sense of smell and used to get sinusitis and headaches.
I've had my sinuses flushed on a few occasions.

My father ate Rennie like sweets and when I started getting raging heartburn (like a blowtorch down my throat) I did likewise. He died when I was a teenager. It was a heart attack but he probably thought it was indigestion again.

As an adult, I was chastised by my dentist when I had tooth decay accusing me of eating too many sweets.

I have known reflux so bad I have had to sit up for a couple of hours night after night between 2:00 and 4:00am drinking far too much Gaviscon to try and quench the fire.
I have experienced coughing fits, sometimes two or three times a day, where I black out and have had to sit up for a couple of hours night after night between 2:00 and 4:00am coughing and drinking far too much cough suppressant.

Following surgery, I have experienced Gastric dumping Syndrome that may have been the cause of me losing consciousness frighteningly on three occasions.

I have been sent to ENT a few times when I have complained about chronic cough, hoarseness etc. Each time they started by testing my hearing and, when finding it a little deficient (particularly my right ear) have said it may be due to the scarring from all the syringing as a boy. And I have had tinnitus for years.
I was given an asthma inhaler ineffectively.
Suffering from dry eyes, I had a blood test for Sjögren's syndrome but told I was unlikely to have it as I'm a man.

I have experienced achalasia and lying on the ground thumping my chest trying desperately to get the piece of chicken I had just swallowed to move.

I've experienced kidney stones, cholecystitis and pancreatitis. I've had a Nissen fundoplication, cholecystectomy and Collis-Nissen revision surgery.

I spent years on 80 mg omeprazole (and used other PPIs and H2 blockers).

Following the painful passing of a kidney stone on holiday in 1994, the doctor who treated me told me to see my own doctor when I got home. He wanted to know what had caused the stone and on questioning realised it was the excess calcium from all the Rennies. He sent me for a scope. The surgeon brought the screen round so I could see as he pointed out my oesophagitis (which is why I had been taking Rennie), my hiatus hernia that had caused my reflux and the bit that "resembled the intestines" and could possibly lead to cancer. He offered an open operation which sounded horrific and which I declined and started on the recently introduced PPI drugs instead.
It was a couple of years later, with the PPIs becoming less effective and my cough becoming worse that I started researching in the library. When I saw the photos of Barrett's Oesophagus, resembling the intestines and that it could possibly lead to cancer, I recognised it as what I had seen on the screen in that first scope. And I didn't stop researching. And the internet has made that much easier.

I hadn't originally gone to my doctor with my heartburn as I had thought it was normal.

Learning about Barrett's

I had been reading and carefully perusing the internet when, in 2009, I was recruited as a trustee of Barrett's Oesophagus Campaign - a national charity that became another victim to Covid. Through this, I met with many distinguished gastroenterologistss and attended symposia to learn more.

Constantly checking PubMed and other sources, I have managed to maintain a research archive since 2012 of all the latest papers connected to Barrett's and acid reflux.

Through answering questions on on-line forums, I have learnt more and the frequently repeated questions prompted this encyclopaedia, drawing upon communication skills I honed teaching children for 30 years, my computer skills developed since 1980 and experience gained previously as a trustee of a health support charity for those with Parkinson's.

Barrett's Wessex

In 2008, responding in an online forum, I met up with a couple of others with Barrett's and we started the process of convening a support group which became Barrett's Wessex charity which funded a Radio Frequency Ablation machine for Southampton and other equipment.

The charity inaugurated branches throughout the Wessex area and groups in London, Essex and Wales before Covid called a halt to all meetings and they ceased to function. The Barrett's UK website was set up as a directory hub for people to know where their nearest support group was.

In place of the support groups, I started Barrett's Patient Support, re-imagining the Barrett's UK site and taking over much of the previous content of the Barrett's Wessex website, including the research archive which I found useful in the production of this encyclopaedia.

Around 2014 I was made a moderator of the international Facebook forum, Barrett's Esophagus Awareness, which I now manage.

Other related actions

In 2015 the NHS ran a Be Clear On Cancer initiative focussing on gastro-oesophageal cancers. Taking advantage of that opportunity, and following a suggestion made by the leader of another charity that has since folded, Barrett's Wessex declared February as Oesophagus Awareness month in UK to focus on Barrett's and cancer. This has taken off but with more cancer charities involved, has become "oesophageal cancer awareness month" in UK, with Barrett's taking a bit of a back seat as being, as one consultant put it, "only important in that it can lead to cancer!"

In 2020, responding to a suggestion from the Spanish group, Asenbar, and to a previous member of Barrett's Wessex, we inaugurated 16 May (Norman Barrett's birthday) as World Barrett's Day.

With the publication of this encyclopaedia, originally in 2015, I was recognised as a "Patient Expert" in Barrett's and reflux, seeing me interviewed on National radio (as well as local radio). This website was inundated with hits following that and various mentions in national newspapers.