the condition > living with Barrett's > personal experiences

Personal experiences

Personal experiences
We hope that you will find reading these experiences helpful and informative.

If you would like to share your own experiences, or comment on some aspect of Barrett’s Oesophagus, please contact us at info@barrettscampaign.org.uk

Your identity will remain confidential unless you authorise us to publish your name.
We reserve the right to edit any submissions.

Gerry Smith
Gerry’s account of his condition has a happy ending.

John Clarkson
How John discovered that he had Barrett’s Oesophagus.

Robin Thomas
Robin relates how Barrett’s can have family links.


My story
Gerry Smith
I seem to have inherited this disorder as my father, who was a market gardener, always suffered from indigestion and took medicine.

As a teenager I worked with him and recall that the many hours bent double doing weeding and similar tasks caused me some discomfort.

Later I joined the Royal Navy. I continued to have minor digestive problems, but I was young, fit and enjoying life. Perhaps the daily ration of very strong rum did little to help my slowly deteriorating oesophagus.

In 1964 I joined a fledgling company and lived a fairly racy life with a great deal of eating and drinking. I do not believe I ate or drank more than my colleagues, but over the years I had more discomfort and consumption of Rennies and Bisodol became essential.

One sensible thing I did when I was 50 was to stop smoking after a lifetime of serious dedication to this stupid addiction.

Around 1990/91 I sought medical help. I was referred to a marvellous consultant and experienced my first gastroscopy examination.

This showed I had ulcers and confirmed that the root cause was a serious hiatus hernia. I was also producing stomach acid at a high rate and so I was placed on daily medication to help control this. I started with Zantac, which was later replaced by Losec.

Fully informed
Regular gastroscopy examinations followed every 18 months, but more frequently if more ulceration occurred. The usual pattern if ulcers were present was to increase my medication and look again in six months.

I developed a wonderful relationship with my consultant and we agreed he would keep me fully informed of the risks and possible outcome of this condition.

In the early 1990s I was diagnosed with Barrett’s Oesophagus. This required even more careful monitoring. I was fully aware that it could ultimately lead to cancer of the oesophagus.

Although I carried on a relatively normal life, drinking alcohol was causing me considerable pain and discomfort, so I stopped drinking. To my surprise, this was incredibly easy and distressed my friends more than me.

In 2001 I had a gastroscopy and the usual biopsy samples were taken. This time though I was called back for a chat with the consultant, who informed me that the biopsy showed I was suffering from high grade dysplasia. This cell abnormality in the oesophagus can be a precursor to cancer and decisions had to be made.

Three options
Essentially there were three options. The first was do nothing and look again in a few months’ time. This was immediately discarded as too risky.

The second was to have laser or similar treatment to burn off the affected area. The risk was that if one rogue cell was left untouched the danger was still there. There was also my age to consider. I was 67 and the consultant felt that I still had some mileage left in me. He said that if I had been 77 then this treatment may have been the best option.

The third option was the most radical, but ultimately the safest, which was surgery to remove the part of the oesophagus affected by Barrett’s. I was left in no doubt that this was a major operation and was referred to a marvellous young surgeon.

My wife and I were impressed by his confident manner and he was frank and open about the risks. I opted for surgery.

Before the operation the surgeon did a lengthy gastroscopy examination during which he took 21 samples for biopsy. He confirmed the high grade dysplasia but found no evidence of cancer. It was not easy to take the decision to undergo major surgery when there was actually nothing wrong with me, only some danger signals. However, in 2001 I had the operation.

Complete success
The procedure was to remove the lower portion of my oesophagus and the top part of my stomach, join the two together and at the same time repair the hiatus hernia. In the event, one third of my oesophagus and half of my stomach were removed.

The operation was a complete success and I remained in hospital for 13 days. The highlight was when staff carry out the ‘watertight’ test where you drink a foul liquid and they watch it go past the join on the X-ray machine and everyone heaves a sigh of relief when it does not leak.

On returning to the ward, my lovely nurse then said those unbelievably wonderful words, ‘Would you like a cup of tea?’.

Later, I was visited by the surgeon who told me I was very lucky. The biopsies had found a ‘minuscule’ cancer on the site of the ulcer and Barrett’s.

He assured me that it was not present anywhere else and that it had been caught so early that he was sure they had removed the entire problem. He added that my decision to go for the operation was without doubt the best one I had made in my whole life!

Update – October 2004
More than three years down the line, I am back to normal, having learned new eating habits. I am leaner, am active, fit and healthy and doing all the things I did before, including plenty of cycling, which I enjoy very much.

I shall be eternally grateful to my consultant because without his diligent monitoring my problem would have developed into the deadly serious cancer of the oesophagus without my knowledge.

He proved without doubt the incalculable value of regularly monitoring a potentially dangerous situation. I shall also be ever indebted to my fantastic surgeon and the wonderful team of dedicated staff at the hospital.

Update – January 2006
I saw my surgeon in September 2005 and he is pleased with my progress and does not want to see me again for two years. It is now more than five years since my operation and I am absolutely fine and enjoying life.

Update – September 2008
My surgeon has given me the all clear again, and I am fit and well.

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My story
John Clarkson
Weak stomachs run in our family. My father seemed to have tummy upsets regularly and I was always a fussy eater, suffering much indigestion from my teens.

The situation was, no doubt, exacerbated by my discovery of beer and by stress and depression, which sometimes caused me to drink even more.

I’m quite sure that these factors produced my chronic acid reflux problems over the years, culminating in a diagnosis of Barrett’s Oesophagus in 2003-4 following months of persistent heartburn.

When I heard that I was to have an endoscopy, I must admit to being pretty scared. I have suffered from claustrophobia in the past and was seriously worried about having a panic attack. With this in mind, I felt that I should opt for sedation during the procedure.

Put at ease
On the day of the endoscopy, I was very nervous but was put more at ease from the moment I arrived at the hospital by the friendliness of the receptionist and the reassuring information from the nurse and doctor.

The great thing about sedation is that one knows very little about the procedure – basically you are pretty well asleep until you wake up to a cup of tea in the recovery room afterwards.

Obviously, someone has to take you home and you can’t drive or work for 24 hours but I can’t say that this was a problem for me. I had a sore throat, but otherwise was fine and able to eat and drink normally.

The follow-up clinic visit with the consultant, Dr Fitzgerald, was very interesting as well as informative, because I saw the photograph of the affected area at the base of my oesophagus – I really shouldn’t have drunk so much beer!

I have been on twice daily esomeprazole since then, which has totally cured my heartburn, and I have had two further endoscopies.

Fortunately, no dysplasia cells have been found and I feel very confident and comfortable with my care and treatment.

I am enrolled in Dr Fitzgerald’s research study to help develop more understanding of Barrett’s and I involved with the East Anglia branch of the support network.

One further consequence is that the fantastic care I received influenced me to change career and I now work in the NHS myself!

Update – January 2009

Again, no disease development at endoscopy last summer. Now on AspECT Trial – randomised to 20mg eomeprazole/no aspirin per day and still fine!

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My story
Robin Thomas

My brother Alan was 59 when he developed swallowing difficulties. He had no previous diagnosis of Barrett’s and I was not aware of heartburn. He was a rugby player with a healthy lifestyle.

Tests revealed cancer and he had surgery. His recovery from operation was rapid, but within 12 months cancer returned and he died, aged 61.

Two years later, my eldest brother Neil, then 68, developed symptoms. Tests revealed oesophageal cancer. A keen rower, he had no apparent history of reflux, although I think regular late night eating did not help. He coped with the operation, but after a year he developed secondaries and died aged 70.

I sought advice, was given an endoscopy, Barrett’s was diagnosed and I obtained support from Dr Fitzgerald at Addenbrooke’s Hospital.

I had no history of heartburn, although twinges may have been heartburn. Reasonably fit with normal weight I am now ‘scoped’ regularly and take Nexium 20mg and Maalox. I generally do not experience discomfort, although my lifestyle is sensible.

On family patterns, there are clusters and Addenbrooke’s is looking into this. I have encouraged my family to get checked out and two cases of Barrett’s have been identified. Relatives of Barrett’s patients can seek medical advice if they have symptoms of reflux.

Finally, I was invited to become involved with a patient support group and became its founder Chair. I encourage all of you to get involved and help to put this condition on the map and secure funding for more research.

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Download our leaflets), What is Barrett’s Oesophagus? (pdf 972kb) and Treatments for Barrett’s Oesophagus (pdf 876kb), free of charge.

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