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Quote Quill Replybullet Topic: BSG Event NEC Birmingham
    Posted: 18 Jan 2008 at 5:29pm
HELP PLEASE - CALLING ALL SUFFERERS
 
The BSG (British Society of Gastroentorolgy) is holding its annual event in March in Birmingham this year and we are hoping that both BOF and PROBE will be represented. In addition there is a conference session on Barretts and a Doctor, Patient and Specialist Nurse will make presentations and take questions. I have agreed to do the Patient presentation. The subject revolves around the 'Patient Experience'. I could wrap up my experience in a minute which would be useless.
Can I ask all sufferers please to email me details of their experience, hopes, fears etc as soon as possible so I can try and assimilate the replies and prepare a presentation that reflects your comments.
Please circulate this 'Call to Arms' as far and wide amongst the patient community as you can.
Many thanks in advance.
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Quote chrisrob Replybullet Posted: 20 Jan 2008 at 12:12pm
OK. Here are some of my experiences as a patient:

Endoscopy. My first gastroscopy was in 1994. I was absolutely dreading it, not knowing what to expect. I was not given any options as to whether I was sedated or not and knew no better at the time.

Apart from the fear of the unknown, the worst part of that first Endoscopy was the throat spray: sprayed so far back into my throat, it nearly made me gag but the following procedure was better than any I’ve had since. With a nurse holding my head still and keeping me calm, I swallowed down the tube. The consultant / surgeon talked to me telling me what he was doing and brought the monitor screen round so I could see. He showed me the red soreness of the gastritis high up my oesophagus and my hiatus hernia but also a long area of my lower oesophagus where the epithelium had mutated to become like the lining of the stomach. (The word “Barrett’s” wasn’t used. Had it been coined for this condition at that time?)

My next Endoscopy was the worst. Performing on stage that night, I didn’t want anaesthetising and requested the throat spray, which was so badly applied as to have been ineffective. No nurse to hold my head, no conversation, no viewing screen and a sore throat with which to attempt to sing that night. I vowed I’d always ask for sedation thereafter. Subsequently, I have fallen asleep as I’ve swallowed the tube and woken to remember nothing: until my most recent endoscopy, last year.

It was supposed to have been under sedation, though I was given a throat spray as well, and was awake throughout the entire procedure – which is when I first learned that my condition was actually Barrett’s (which I’d by then read up about researching the net) as the consultant / surgeon showed the screen to his nurse to show her what it looked like whilst she wrote it down on the record form.

My present treatment is being managed by an excellent male GI specialist nurse and a consultant who gives me the impression he’s not really concerned. I would like surgery. My nurse said he would recommend I saw the surgeon in December but my consultant said to wait until April.) Is this because of funding?) Meanwhile I have now (January) developed reflux-induced late-onset asthma, Couldn’t this have been prevented if I’d had the op?




Edited by chrisrob - 20 Jan 2008 at 12:14pm
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Quote Quill Replybullet Posted: 21 Jan 2008 at 8:51am
Many thanks, for your response, Chris. I did not know there was such a thing as 'reflux-induced late-onset asthma' which is of particular concern to me as I was actually born with asthma and have largely grown out of it although as you mention it I confess that when I have had a bad reflux attack, often due to me overindulging!, I too get some of these symptoms and have to revert to the 'spray' to help me breathe.
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Quote Quill Replybullet Posted: 23 Jan 2008 at 12:19pm
Help Please
In addition to details of your experience of BO it would also help to have details of your experience with your GP and the NHS as this is another important aspect, as well as your hopes and fears.
Thanks
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Quote Geraint Replybullet Posted: 29 Jan 2008 at 2:59pm
Suffered and ate lots of indigestion tablets for 4 years as my GP avoids referring to specialists. Finally had a referral for Gastroscopy in August, when I saw his son at the surgery instead of my older GP. Have bi annual Colonoscopies already due to family history. No option given re sedation for those, I always go straight to sleep but awoke during my last one. Not too pleasant!
Decided against sedation for first Gastroscopy, didn't want to lose a day being drowsy.
Unfortunately spray seemed desultory and was directed on the roof of my mouth, wasn't given a chance to swallow, tube was shoved down. I had a blocked nose and was gagging on my spit most of the time. The nurse thought I was panicking and kept grabbing my wrist when I tried to signal the problem, even though I was giving him a "thumbs up" signal before pointing to my throat. I didn't like being talked about like I wasn't there and picked up "Barrett's" in the general conversation. Very worried at that as I'd read up about it on the web. Didn't get a chance to explain to the nurse about the problem I'd been having as everyone seemed to shoot off in different directions as I was
whisked out to recovery. Plus point was I could just get dressed and walk out while everyone else was being woken up. Very positive experience an hour later when spoken to in the clinic. Told I had nothing to worry about now, I was  going on Ezomeprazole for life, but couldn't drink more than one glass of beer at Christmas and on my birthday! Had a sore throat for weeks afterwards, felt bruised and tender.
When I went back to young GP to renew my prescription, he felt that one pint a year was "a bit harsh".
My next Gastroscopy was in October. Insisted on blowing my nose before they started and explained the problems I had encountered. This time got a good squirt of Lignocaine in the right place and was told when to swallow. Would be willing, if not happy, to repeat it weekly as I was able to breath throughout and was talked TO by the endoscopist  occasionally. Best bit was later when I actually saw the Consultant.  The previous ulceration and duodenitis had cleared up. I'm still left with Barrett's and Hiatus Hernia but he said I could have the odd few beers as long as I didn't hit large amounts of spirits. I'm quite confident in submitting to surgical procedures but can imagine others feeling extremely frightened of the endoscopy. It was always something I said I didn't fancy. However, I would be unlikely to consider bothering with sedation in the future.
If the professionals take that on board for those who are nervous they could make the whole thing less stressful from the outset. I've now signed up for the AspECT Trial which has entailed cutting my PPI dose in half and taking Aspirin. I can eat more or less what I like, whenever I like, but don't take liberties with hot curries or large amounts of alcohol any more.
However, there seem to be a range of groups involved in trials / advice /support.
Am I missing something or should they all be working under one umbrella?
Perhaps some people would be willing to help researchers in areas other than those to which their local hospital is allied.


Edited by Geraint - 29 Jan 2008 at 3:03pm
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Quote Quill Replybullet Posted: 29 Jan 2008 at 3:02pm
Thanks for your response, much appreciated
 
What I was thinking of doing was compiling a talk from the feedback that I get and then handing out hard copies of the responses themselves.

Is this OK?

Would you like me to remove your name?

Take care

Charles

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Quote Geraint Replybullet Posted: 29 Jan 2008 at 3:05pm
Whatever suits you. I'm happy for my name to go on, or off, as you wish.
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Quote Moggs Replybullet Posted: 29 Jan 2008 at 7:17pm
Hi Charles
 
Here are my experiences:
 
I suffered with chest pains, sickness and what was thought to be IBS for several years , sometimes nearly or actually passing out. The first few times it was in the middle of the night & I though I was having a heart attack which panicked me then making it worse. My husband persuaded me to take Gaviscon & this seamed to help. When I started getting it in the day time I went back to my GP and as I also had low blood preasure this was also thought to be the cause, so I was sent to see a consultant @ my local hospital for possible tinitus! he however diagnosed stomach migrain! and said to take migrain tablets.
 
Then I started getting the chest pains & sickness more often & it was so bad I was having to take at least one day off each time after an attack. I then went to France one weekend had a very bad attack & passed out again & then in the following few weeks I started having them on a regular basis getting worse each time, so back to my GP in August 1999.
 
He then decided to send me to the hospital to see a gastrologist. I asked to go private as my employer had insurance for me, unfortuantely this particular GP did not believe in Private Medican and told me  it would be only a 6 wk wait - I waited then work got busy & I realized I'd not heard anything so back to the GP he rung the hospital yes they had rec my details  & my appointment would be Feb 2000 (6mths not 6wks after  being refered) . This was now Dec 1999 so I decided to wait. My appointment was then brought forward to Jan 2000.
 
I saw the consultants registra and he said that there was definately something a miss & I'd need a gastroscopie which would be done in about 6wks time & I'd get an appointment through in 2 wks. I waited 4 wks then back to my GP luckily I was able to insist on see a different one and she was furious I'd not heard & rung the hospital there & then & was tld it would be at least another 6 mths. She then arranged for me to go private at the local Bupa hospital in 3 wks time i.e begining of April 2000.
 
I was given sedation,  as I suffer from Asthma too, I found this very relaxing & calming,   but I was able hear what was said and heard the consultant say to his team 'there is the problem'. He then came to see me after i had had tiome to come round in my room and advised me I had something called Barrett's Oesophigus but there was no tumurs. He then arranged for me to go & see him at the Bupa hospital to explain more in 4 weeks when he would have the esults of biopsies he had taken. - This worried me a bit but the fact there was no tumer I realized it would not be cancerous although I did not know what Barretts was. He also told me I must give up smoking straight away or it could go cancerous & he wanted to hear I no longer smoked when he saw me at the consultation.
 
I gave up smoking 2 days before I saw him, I could then say yes I no longer smoked! (I am pleased to say I still do not smoke  8 yrs down the road.) At this consultation he was very good at explaining what Barrets was in language I could understand & how it would be controlled as far as possble with Lazerprozal and regular gastroscopies. He advised that as far as what to eat & drink was by trial & error but only small amounts - little & often - the only real no no was anything fizzy or over spicy.  He said some people can't take tomatoes where others can  - I can in small quantities. I can't take cooked cheese dishes or more than 2 glasses of alcohol and then only with food to soak it up!.
 
Later in 2000 I was at my gps again when she noticed me clutch my stomach area & asked what was wrong I said Oh just by Barretts playing up - no thats yr liver area . So off to the consultant again - I had blood tests & yes there was a liver problem which he advised can happen with Barretts  but he thought it would probably right itself so I had to cut down on my food more, loose weight & have regular blood tests. I had one every 2 weeks for 3 mths till it showed clear again.  This has come back once or twice since but not so bad & luckly every time rights itself.
 
I had gastroscopies every 6 mths in the 1 st  year as there was changes going on and he wanted to keep an eye on them. I then went 1 year for 2 years then for 2 years as there was no further changes but then in 2005 I had to go back to 6 mths as there was a big change . I asked what he meant as he had said I was in a pre cancerous condition & he said holding out his hands apart there is cancer one end & no cancer the other & I was in the middle. He upped my Lazerprozal.
 
I had my last gastroscopy in April last year 2007 & there was no further change  & I can now go another 2 years till the next one unless I have any problems. I was to keep eating small amounts & not put on weight try & get down to about 9 stone   & that hopefully would all help - I have joined a gym and am now a steady 9 - 9 stone 2lb & feeling fitter than I have for ages & younger!! 
 
I took part in the gene blood tests that are being done at Cambridge into Barretts. Also I have now looked into my ancestory on my fathers side. His father died when he was only 6 but I have obtained a death cert & it shows he has Oespophgus Cancer as cause of death in those days Barretts had not been named so probaly was. Also my mother died of  stomach cancer which started around the top of the stomach. So looks as though it could well be hereditary & unfortunatley I have it from both sides of my family if it is.
 
Funny think is I was born with Pyloric Stynosis so was one of my cousins and I had a lot of stomach trouble & asthma as a child - attending hosptal on a regular basis till I was 8 years old when the asthma eased & the stomach with it. I now also have Asthma back which has been worse since the Barretts problem worsened. However my inhales control this quite well.   
 
My young grandson has been born with a reflux problem too. We have been told he should grow out of it by the time he's 8 (he's now nearly 2) I do hope so & that he has not got the tendancy to Barretts.
 
Hope some of this will help you Charles in yr talk @ the NEC
 
Moggs
 
 
 
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Quote chrisrob Replybullet Posted: 31 Jan 2008 at 8:56am

I think what has been shown by Geraint’s, Moggs’s and my accounts above, is the importance of concerned medics who take time to discuss and show an interest in the patients’ welfare. (Although I do know the difficulty: my step son is an oncologist who only gets a few minutes to tell patients they’ve got cancer and are going to die – which he has to repeat several times a day!)

 

My summary of living with Barrett’s: (Any of my writing may be used in any way.)

 

I’m not worried by the increased risk of contracting oesophageal cancer: the majority of us don’t get it and those of us diagnosed are the lucky ones in that we’ll probably get regular screening.

I have to watch what and when I eat and drink.

It can spoil social life. I don’t go out with friends for a drink. When I visit friends, I am always refusing a drink.

It can have disastrous effects on relationships: physical activity has to be approached carefully at times to suit the reflux; side effects of drugs can make men impotent and lose their libido far more frequently than the drugs companies will admit.

I have to get up in the middle of the night once a week with reflux or cough and have to sit upright for 2 hours before I can attempt to lie down again. The next day, of course, I am very tired, usually with a headache, and irritable.

My physical activities have been vastly curtailed: I cannot do things, like bending, that would scrunch my abdomen; my reflux has also induced asthma, which robs me of my breath.

I rely on an armoury of drugs: omeprazole (ppi), domperidone (anti emetic), Gaviscon (reflux inhibitor), calcium carbonate antacid tablets, pholcodine linctus (cough suppressant) and Clenil (asthma preventer inhaler). Fortunately I have just reached my 60th birthday so can now get most of these free.

My hope for the future is that I’ll have a laproscopic fundoplication that will cure my hiatus hernia, my reflux and my asthma.

With Gordon Brown’s promise of making the health service proactive with more free screening, I hope the simple “sponge on a string” technique can be developed and made available for all. I have two brothers – one with asthma and an identical twin – and both my parents had digestion problems, yet they aren’t even interested in asking for endoscopy to see if they’re developing Barrett’s.

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Quote Quill Replybullet Posted: 05 Feb 2008 at 10:03am
Thank you all for taking the time and trouble to post your 'accounts' here. Please encourage others to do likewise or email me direct. More than happy to keep any information provided 'anonymous'.
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