BARRETT'S
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My Story
Background and early years.
Well everyone gets indigestion don't they?
It's difficult to tell where my story begins. Did I always have problems?
My father used to take Rennies frequently. He died of a heart attack when I was in my teens. And my mother used to take Bisodol.
I do remember once as a young boy being praised by my father for sitting up smartly when I was eating. I was only doing it because it seemed to make things easier.
And I always seemed to be suffering from catarrh. Now I wonder whether it was from refluxed acid?
Noticing the problem
It wasn't until the 1990's I really started identifying a problem. I had moved to a deputy head position at a large junior school having left the advisory job I had had. My new headteacher may have felt threatened as I felt I was put under increasing amounts of stress by him (which ultimately led to my taking early retirement on health grounds in 1997).
It was my cough that most people noticed. To me the worst things were the acid reflux that felt like a blowtorch down my throat (ordinary heartburn just doesn't compare), bile regurgitation (waking up at 3:00am with a mouthful of thick green foul tasting remains of what had been eaten eight hours previously. Anyone who has ever tasted that won't forget it!) and inability to swallow and food getting painfully stuck in the throat. It doesn't help that meals had to be rushed as there were constant lunch time meetings. Chicken breast and dry bread were the worst but they frequently constituted my sandwiches.
My GP sent me to ENT specialists initially to see whether my cough was related to my history of catarrh or whether I had an allergy.
For my indigestion, it was in 1994 I had my first gastroscopy. My doctor had already tried prescribing Ranitidine and, when it hadn't worked, omeprazole to counteract the excess acid.
My first endoscopy
The specialist at Haslar Hospital, sprayed the back of my throat. The spray made me gag but he got it just where it was needed to make the subsequent procedure as comfortable as possible. I lay on my side on a trolley with a couple of nurses holding my head still. A bit was placed in my mouth and the endoscope passed through it. It is a long stiff but flexible tube housing a camera. As it reached the back of my mouth, I was told to swallow and it was pushed into my gullet.
The consultant moved the large display monitor so I could see what he was doing. He showed me my stomach and the sphincter at the duodenum. As he came back up, he pointed out my hiatus hernia and the red lining to the lower oesophagus that looked like the "lining of the intestines" which he said shouldn't be there. Then he showed me the vivid red scarring higher up the oesophagus: the oesophagitis from the acid attacking it.
Switching me to lansoprazole and increasing the effective dosage did stop the painful reflux. I learned that lansoprazole and omeprazole were both “PPI's” = Proton Pump Inhibitors that reduce the amount of acid the stomach produces.
Further scopes
My second scope was in 1997. I had been away from the stressful school environment for six months. Being in a show (I had just joined Fareham Musical Society) that night, I requested a throat spray instead of the offered sedation which would have left me groggy on stage. I wish I hadn't. That doctor wasn't as good as the first. The spray was not applied effectively and I had a sore throat when I was singing that evening.
My next scope was in 1999 for which I was well sedated. I remember the same initial procedure right up to being asked to swallow the endoscope and then remember waking up after it was all over.
At the follow up consultation a couple of weeks later, the surgeon suggested that in view of the fact I had had reflux problems for such a long time, he thought I would be a good candidate for a fundopliocation operation. The problem of being on PPIs for a long period, he said, was that they could mask the presence of cancer. I went away to think about it.
Purely coincidentally, I found someone who had had the fundoplication operation. She described it. (In those days, it was done by open surgery. There was a laparoscopic technique, but it was rare and I wouldn't be offered it.) It sounded horrendous. I discussed it with my GP. We agreed that, since the medication was working so well, I would continue managing it that way.
Eight years later
It wasn't until 2007 I had my next endoscopy. Much had happened in the meantime.
I had met and married Karen. We had been travelling in Asia. I had moved into her bungalow and we had sold my house.
But my cough was getting worse and I was needing to supplement my PPI with calcium carbonate tablets frequently and Gaviscon most nights. When I coughed, it was violent and I couldn't stop until I nearly blacked out. If I was standing at the time, I had to hold on to something so I wouldn't fall over. I would have to get up about 3:00am at least once a week and sit up coughing for two hours before I knew it was safe to lie down again. I added pholcodine linctus (a cough suppressant) to my regular nightime medication.
I had started researching reflux problems on the internet and realised it was the likely cause of my cough. I had also learned about “Barrett's Oesophagus” and thought this could be what the consultant had described in 1994 but not named. (To be fair, he hadn't taken the necessary biopsy which would have determined a diagnosis.) During the 1997 endoscopy, they had thought to test for helicobacter pylori (with negative result).
I had asked for sedation for the 2007 endoscopy but it had no effect. I was conscious all through it, but fortunately the throat spray was effective. Thus it was that I heard the endoscopist point out the Barrett's to the nurse accompanying him and saw him write it on the bottom of the post scope report sheet. However, when I went to the follow-up out-patient clinic a couple of weeks later, I was told the pathology was inconclusive. (The next scope provided a positive tissue sample.)
I asked the GI specialist nurse if I could possible be referred for surgery. He said he would get his boss to write as it looked better coming from him, but he suggested delaying for six months to consider. I was put on the very highest dose of omeprazole.
Opting for surgery
I eventually saw the surgeon in June 2008. By then I was experiencing side effects from the omeprazole. Following a visit to my GP and subsequent blood tests, I had been diagnosed anaemic with low iron. I had been getting breathless at the slightest exercise and hadn't tried riding my bike since November 2007 when I had exhausted myself trying to get home on it. The increased medication had helped with the cough to the extent that I was only getting a coughing fit about once a week and hadn't had to sit up through the night again.
Of course, I didn't see the surgeon I thought I was going to but the registrar of one of his team. He wanted to check the anaemia wasn't occasioned by any other factor so requested a colonoscopy in addition to another gastroscopy, which I had in July. I didn't get the results until October (having been away throughout August). Nothing sinister apart from the Barrett's. I was put on the waiting list for a Laparosocopic Nissen Fundoplication which I would undergo “within 18 weeks”.
I had to phone and nag to eventually get a date but, after 17 weeks, there I was at the hospital having blood tests, ECG, etc. I saw the anaesthetist and the surgeon. I was dismayed when I found it was the registrar I'd seen before.
I had read many horror stories of people who had had the same operation and one thing everyone seemed agreed on was the surgeon should be experienced. I asked him if he had done many of these operations. His reply was that he didn't think it was so important how many a surgeon had done as how well prepared things were. (Hardly reassuring!)
Then I was called to a side room and told there was a bed shortage and I was sent home.
After more nagging on the phone, I had a return appointment a couple of weeks later.
This time I didn't need the same amount of “preparation” (blood tests, ECG's etc.). I was given a gown and changed into it. Then a nurse asked me to follow her. It was as we were walking that it became apparent we were actually walking to the theatre. I quickly needed the toilet and the nurse and my wife waited.
The Laparoscopic Nissen Fundoplication operation (16 March 2009)
I reached the waiting room and had to say goodbye to Karen and lie on a trolley.
Some time later, I was wheeled into the ante room to the theatre and the anaesthetist was saying to me, “Now I'll make you forget me,” as he emptied a hypodermic into the cannula on the back of my hand. I was facing a large clockface. It said 11:00am.
The next I knew, I was still lying on the trolley and looking at a large clockface that said 12:45. My immediate thought was that the operation had been cancelled. I could feel no pain but was thirsty. After a little while, I realised I must be in the recovery room. Eventually I managed to attract a nurse's attention and croaked I was thirsty at her. She brought a bottle with a straw and I sipped a little.
I was kept in the recovery room for hours as the previous occupant of the bed I was scheduled for had decided to stay put. Karen was getting anxious but I was getting some sleep.
Eventually, I was taken to a ward and reunited with Karen and managed to get a proper drink of water. I had a saline drip attached. Apparently the nurses were concerned I might be dehydrated and upped the drip so I was to receive two litres intravenously during the night. The consequence of that was that I was up every five minutes filling urine bottles. But I was in no pain. My stomach felt a bit bruised and I was given soluble paracetamol.
The next morning, the surgeon did his rounds. It was the same registrar with a gaggle of students in tow. He said he was very pleased at how the operation had gone and I was to eat breakfast and lunch. (What he didn't say was that assuming I managed to eat lunch OK, I could go home.)
Breakfast was some rather solid porridge and I managed half a portion. For lunch I selected fish in cheese sauce with creamed potato followed by ice cream. It was delicious and I ate and swallowed with no difficulty but was full after half a portion.
So then I was able to go home. Karen had phoned and I had told her they were to evict me after lunch so she'd come to fetch me.
It took some time to get the discharge papers signed and to be given a box of soluble paracetamol but otherwise I was free to go.
I was walking around shops the next day having had no pain killers and able to eat soft foods. Within a couple of days I felt I was able to eat most things with care (but only small portions).
I lost weight at the rate of 2lbs a day for the first week and ½lb a day the next.
Writing this just six weeks after the operation, I feel that surgeon gave me my life back. I haven't had my post op review yet but when I do, I owe him an apology.
I am cycling and exercising again without getting breathless. I am eating normally (and nearly normal sized portions). I haven't had any pain. The side effect symptoms of the drugs have gone and I am drug free.
Post op
The reflux has been cured but the Barrett's will still remain. I will be scoped regularly every two years to make sure there's no signs of the dysplasia that could herald the pre-cancerous changes. But with the acid environment removed, the chance of progression may have been reduced.
A few months later, I had to have another "abdominable" laparoscopic operation for cholecystitis caused as a result of all the years of reflux!
Click here to read my account of that gall bladder operation.
2013 Update
The above chronicle ended in 2009.
Following my operations, I was reflux free, off medication and cycling 20 to 30 miles a day.
In January 2013 I believe I contracted norovirus - probably on the 2 hour coach journey to or from a meeting in London.
Between 2:00 am and 7:00 am every 20 minutes was a trip to the bathroom where I felt I was turning my insides out retching. I was certain my fundo wrap would not withstand that sort of treatment.
Little by little the reflux cough returned. I was hopeful of managing it, following the advice I give others.
However, as it progressively worsened there came a time I knew I must have it redone.
In July I saw the nurse specialist practitioner to discuss my case.
I was scoped again on 28th August which confirmed the wrap was loose and there was significant oesphagitis again - proving acid was refluxing. I have been referred to the surgical team with an appointment on December 4th to discuss options.
I am presently attempting to manage the acid with 300mg Ranitidine and frequent Gaviscon. It does nothing for the reflux of course and the cough is bad. I am also frequently out of breath and tired which has reduced my cycling. However, I am not anaemic (as I had been on PPIs previously).
2014
The surgeon agreed with my self diagnosis backed up by the medical endoscopy and my history and placed me on the waiting list without requiring a surgical endoscopy or another pH manometry.
I have the pre-op assessment on January 23rd but have no date for the op itself yet.
The acid has been a problem over Christmas - not helped by me eating and drinking too much. I have boosted my 300mg Ranitidine by upto a further 150mg some days and relied heavily on copious amounts of Gaviscon.
Click here for "The Road to Refundo" (the next chapter including fundoplication repair surgery).
For more information about Barrett's and reflux in general, visit this website:
or the regional support charity (which I currently chair): www.barrettswessex.org.uk