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Road to NHS refundo

Printed From: Barrett's Support Forum
Category: Barrett's Support Forum
Forum Name: Barrett's Oesophagus
Forum Discription: Your Questions about Barrett's Oesophagus
URL: http://www.barrettscampaign.org.uk/forum//forum_posts.asp?TID=1227
Printed Date: 20 Oct 2019 at 11:40pm


Topic: Road to NHS refundo
Posted By: chrisrob
Subject: Road to NHS refundo
Date Posted: 07 Aug 2013 at 11:35am
Following a violent bout of what I believe to have been Norovirus back in January (5 hours of violent, uncontrollable, retching every 20 minutes), I am increasingly of the belief the fundoplication wrap I had over 4 years ago has come undone.

My reflux cough is back along with all the other compromised respiratory associations of reflux.
And I am following the advice I give others: small portions, loose clothing, no food for at least 3 hours before bed, bed head raised 7" etc.

I eventually decided to do something about seeking having it done again. On 1st July, I emailed our Gastro nurse specialist practitioner, Shirley James (as per the "virtual clinic" she runs). She's brilliant and saw me in clinic a couple of weeks later. I will need another scope to assess the wrap before I can be put on the surgical list.
It is not life critical so I expected a few weeks wait. To speed things up, she requested the scop be done by surgical team rather than medical. And I received a date: 10 September.

Today I received a letter from the hospital. It has been rescheduled for 24th September!
Yesterday I had a really rough day with the coughing. I hope to have this sorted sooner rather than later.
Anyway, I'd planned to be away during that week so I phoned the hospital to change the appointment date.
And they have managed to find me a slot on 28th Auhust (probably a cancellation?).

Prior to my previous fundo (for which I'd had to wait 20 weeks!), I'd been on 80mg omeprazole. I was totally out of breath and tired all the time which I put down to being anaemic from the PPI. This time I am not on PPIs. (I have only noticed acid a couple of times and taken a single 75mg ranitidine - or if it's night time a small swig of Gaviscon.)
But I am feeling out of breath and tired again from the reflux. I forced myself to go cycling yesterday - though didn't think I had the energy. I surprised myself and found the exercise actually helped open the airways.

If necessary, I would pay to have this done privately but, having paid into NHS all my working life, and not wishing to be treated as any kind of a special case, I'll see how long the process takes now.

Chris

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk



Replies:
Posted By: LoraB
Date Posted: 07 Aug 2013 at 1:05pm
Hi Chris

I am so sorry to hear your news

At least by ringing the hospital you managed to save a few weeks of waiting for the scope.

Interesting thoughts regarding breathlessness while not taking PPIs.

Do you think it possible you have developed Asthma or even a form of COPD as a result of the years of reflux?

Just a thought.



Posted By: chrisrob
Date Posted: 07 Aug 2013 at 2:24pm
Hi Lora,

There is a strong connection between asthma and GORD. Those with asthma are more prone to it and those with GORD are at risk of asthma - possibly from aspiration.

I have been tested for asthma - but don't have it. I do still have a spirometer I was given at the time and was tried with the inhalers without effect.

But previously whenever I went to the doctor with the cough I was always sent to ENT who'd identify a problem I have with my ears but didn't associate the cough with the reflux I now know it was / is.

But I am worried what long term damage the cough and aspirated reflux may be doing to my lungs - which is why I'm keen to get this fundo redone asap.

Thanks

Chris

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: DanJ
Date Posted: 08 Aug 2013 at 3:09pm
Sorry to read this Chris , i hope you get sorted ASAP!
It`s interesting to note the out of breath thing , i have/had that , even just something like getting in the car and putting the seat belt on , its strange , its just a sort of a huff and puff type of event , weird , yet i can run for 3-4-5 miles and be OK (tired obviously but not incapable)
 
I had all sorts of tests , testing my blowing etc and all came back OK , but as above i have been on PPI`s for 15 months continusouly so could be them...?


Posted By: teacher man
Date Posted: 08 Aug 2013 at 7:39pm
hi Chris, what are your thoughts on the LInx? If you had to do over, would you still have the nissen or LInx? Can they do the LInx after you have the nissen?


Posted By: chrisrob
Date Posted: 09 Aug 2013 at 9:06am
Hi TeacherMan,

I am still wary of LINX because it is too new to have any long term data available as to its efficacy.
Until recently it was counter indicated for Barrett's patients because of the possibility of migration. And, initially, it was feared it would need surgical removal prior to MRI scan. Now it's considered safe for low power (0.7 Gauss) scan.

Some years ago, promising noises were made about http://img.tfd.com/mk/P/X2604-P-55.png - Angelchick - an inflatable doughnut around the oesophagus. Over time, however, it suffered migration and is not now used.

http://www.toraxmedical.com/linx/ - LINX does look like a great device and I have followed its progress for a few years, but there have been many other attempts in the past (and present) at producing a prosthetic implant or surgical procedure to minimise reflux. http://www.aetna.com/cpb/medical/data/200_299/0213.html - This article assess many - including http://www.healthline.com/health/gerd/endocinch-procedure - EndoCinch , http://www.strettacentre.com/stretta - Stretta , http://www.endogastricsolutions.com/EsophyX.aspx - EsophyX .

I would love LINX to prove itself effective in the long term and wish http://www.dailymail.co.uk/tvshowbiz/article-2376476/Did-Dolly-Parton-secret-surgery-amid-cancer-fears-Weight-loss-sparks-concern.html - Dolly Parton success with hers, but, personally, I feel at present the Nissen Fundoplication is still the best surgical option as, using the body's own tissue, it has the same elasticity as the underlying musculature it supports.
The biggest drawback is how long it lasts: there are no guarantees. My first wrap lasted four years. Others on this forum have had theirs com undone. It's a gamble.

The surgeons at Southampton now favour the http://www.ajronline.org/doi/pdf/10.2214/ajr.145.4.729 - Collis-Nissen which they reckon provides a more secure wrap and greater longevity. I'll see if I'm eligible.

The other device I would love to see succeed is http://www.endostim.com/ - Endostim - the "pacemaker" for the Lower Oesophageal Sphincter delivering electrical pulses to control the musculature. (I believe there is now a clinical trial about to start in US (previously it has not been approved for use in US) - but have no other info.)

Cheers

Chris


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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: jcombs99
Date Posted: 09 Aug 2013 at 12:05pm
Once you have Fundo you can only REFUNDO (or I would have it) but with a LINX you can remove then fundo .Its all in the Skill of the doctor and taking care of it .


Posted By: bouncethruit
Date Posted: 11 Aug 2013 at 5:53pm
Hi Chris,
 
I can completely identify where your coming from.  I am really scared of contracting a stomach bug after my wrap was done two years ago. 
 
I take Domperidone all the time to avoid any possibility of asthma/COPD because the COPD tendancy runs in my late dad's family and I had asthma/pneumonia constantly when I was a kid.  So, because of this, I asked my consultant and he told me there was no danger of any gastric fluids ending up on my lungs.  
 
Because of personal experience, I must admit, I am not completely convinced - especially when you'r asleep at night.  I think its paramount to get your bed raised.
 
 
All I have to say is follow your gut instinct (lol, sorry couldn't resist!)  
 
Good luck with the refundoWink
 
Gillyx


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GfromWalesUK


Posted By: jcombs99
Date Posted: 11 Aug 2013 at 9:11pm
Get a PH test done .Your doctor sounds like a used car salesperson ..


Posted By: chrisrob
Date Posted: 12 Aug 2013 at 8:10am
Thanks Gilly,

Domperidone (Motillium) is an anti-emetic used to help peristalsis. I was previously prescribed it after the better Cisapride was withdrawn in UK (and US) some years ago, but didn't find it helped. I still have some in the medicine chest and it's not out of date. May try it. The cough's just so debilitating - and scary when I practically black out.
And I use 7" bed risers http://www.ebay.co.uk/itm/Easy-Rise-Bed-Risers-Height-Adjusting-Raising-Block-New-/130695826731?pt=UK_Health_Beauty_Mobility_Disability_Medical_ET&hash=item1e6e140d2b - like these.

But it only takes a small amount of liquid to start me coughing at any time. (Scared to drink.)

Cheers
Chris

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: chrisrob
Date Posted: 10 Sep 2013 at 6:54pm
The latest on my road to refundo via NHS:

Following initial email on 1st July, I saw our excellent specialist nurse practitioner, Shirley James in July and was scoped by one of our gastro consultants (and trustee on BW committee), Phil Boger on 28 August.
Shirley emailed me the next day to say she was sorry endoscopy had sent me for medical scope rather than surgical scope as she'd requested. (Not much difference but surgical team know what they're looking for. But Phil did a great job with the scope and I hope the photos he took will satisfy the surgical team. (Otherwise, they'll want to scope again!)

The protocol is a paper application has now been made to surgical team and I am awaiting an appointment with gastro surgeon Jamie Kelly.

Meanwhile, as the scope had shown erosion in the middle of the Barrett's and some streaking of oesophagitis above, I know I have to be back on acid blockers. And have started noticing (mild) heartburn again whilst the cough is getting worse. (Worried I may develop bronchiectasis.)

But prior to first fundo, high dose PPI had caused anaemia prohibiting me from being able to manage exercise. I am determined to continue my daily cycling so am trying to manage it with H2 blocker (ranitidine) and generic version of Gaviscon. (Shirley James said I need 300mg ranitidine.)

I had been buying OTC ranitidine (89p for 12 x 75mg tablets in Aldi). I was alarmed to find no-one challenged me when I bought 6 boxes. Though you cannot buy more than 2 boxes of paracetamol (8 tablets in each), at a time!

But I'm at the age when I get my prescriptions free so saw my GP yesterday for a prescription for 300mg ranitidine and Peptac (generic equiv of Gaviscon).

It appalled me how little she knew about the condition. She was a bit miffed, I think, that I had gone directly to the hospital clinic rather than ask for a referral from her. (It's the "virtual clinic" Shirley runs, via phone or email, to get things done quicker.)

She asked why I didn't want PPI. When I reminded her I had been anaemic before, she had thought that was because the Barrett's scar tissue had been bleeding. (Thus showing no understanding of what Barrett's cells are - and I have had no bleeding.) I had to explain to her about hypochlorhydria.

When I asked if she had any ideas about action I could take for reflux cough, she said PPIs. I had to tell her PPIs stop acid but not reflux and the cough is from aspirated refluxate be it acidic or not. She had thought the cough was triggered in some way via a nerve when the oesophagus was irritated by acid.

When I told her I was learning about Active Cycle of Breathing Technique (ACBT) used for cystic fibrosis sufferers and for those with bronchiectasis, she shrugged her shoulders to indicate she didn't know what I was talking about.

It does worry me that our GPs are now our gatekeepers to NHS treatment. With this level of lack of knowledge, no-one would get sent to specialists - she'd just throw more tablets at them.

I do hope at least some GPs will follow the http://learning.bmj.com/learning/module-intro/barretts-oesophagus---diagnosis-and-management-.html?moduleId=10045036&locale=en_GB - BMJ learning module on Barrett's Oesophagus .

It's free. Anyone may do it. Doctors will receive 'Continuous Professional Development' points for doing so.

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: DanJ
Date Posted: 11 Sep 2013 at 8:34am
Chris , good luck with everything , it`s very intersting reading your story
 
I totally agree on the GP being the gatewat , yet with such minimal knowledge
 
As i said with my care , the GP said "i have never seen a 35 year old with cancer"
 
Staggering isnt it , i was lucky as you suggested go direct to the unit at the hospital , thank god they put me on the list , i hope that option doesnt get closed down to save even more funds in future
 
All the best


Posted By: jcombs99
Date Posted: 11 Sep 2013 at 9:27am
Danj
    Have your gp go to treatbarretts.com and view the videos . That one the father 65 had barretts but the sons case @ 28 went to cancer and he died it's been online for like 5 yrs now. Theirs a reason they have GIs and yes they cost more .This isn't a Cheap trip it's a persons healthcare and his life.

Cheers

Jeff


Posted By: LoraB
Date Posted: 13 Sep 2013 at 8:14am
Hi Chris

So glad the scope went well.I hope you don't have to wait too long for an appointment.

I fear your experience regarding the GPs knowledge,or should I say lack of knowledge about Barrett's and PPIs is normal. Yes I agree that they are gatekeepers but it seems to me their main function is to make sure as few as possible get through that gate.

OH has a long standing condition,over the years we have researched long and hard. GP always tries to take the easiest (cheapest?) route. This will only get worse so we have to be on top of things as regards what is available.

That is why this site is invaluable.

I would not have realised the full significance of a Barrett's diagnosis, would not have known what to ask when seeing the consultant. I was able to understand what he was telling me.

Thanks for the update.


Posted By: chrisrob
Date Posted: 13 Sep 2013 at 2:40pm
Just received an email from my gstroenterologist / endoscopist: "Just to let you know your biopsies have shown barrett’s with intestinal metaplasia and acute inflammation but no dysplasia."

He has written to the surgeon and hopes the photos he took will be sufficient so they don't need to rescope me before operating.
(Just wish I knew when that's likely to be. Plan to be away for 3 weeks in November.)

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: Sandra W
Date Posted: 17 Sep 2013 at 1:09pm
Hi Chris,
 
So what are the magic words? How did you manage to get TWO fundos? So far, I haven't even been able to get ONE!!!  LOL!!!
 
Seriously, sorry to hear you've had problems with the wrap.  Yes, all that vomiting was probably the final straw for the wrap but it's great news that you have a real chance to get the job done again.  I hope you won't have to wait too long.
 
Yes, I know what you mean about doctors not knowing very much about Barrett's (and, in some cases, not much else, either!!!).  I recently met a senior nurse who couldn't spell "oesophagus," and a doctor who thought my potassium supplement was a laxative, knew absolutely nothing about the possible side-effects of PPIs, and didn't even seem to know the difference between dysplasia and cancer!!!  Time they all got down to some serious training sessions, I reckon!!!
 
Keep us posted, and I hope all goes well.
 
All the best,
 
Sandra.


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E-mail: swilliams888@hotmail.co.uk


Posted By: chrisrob
Date Posted: 17 Sep 2013 at 1:32pm
I don't think I'm getting special treatment, though our specialist nurse practitioner, Shirley, is taking a personal interest and did email me on Sunday regarding her request to surgical team even prior to my latest scope. But other patients have told me she takes that interest with all her patients.

I was made to wait for my first fundo (in case I changed my mind) and had the 24hr pH manometry etc to check I was suitable for it. But I demonstrated (very high DeMeester score) PPIs were effective in controlling the acid not the reflux - and I got what I wanted.

This time, I knew symptomatically my reflux had returned (which I've had confirmed by scope). I shouldn't need to prove my suitability for the op so I see no reason for delay (apart from waiting list). Just need to hear from the surgeon.

http://onlinelibrary.wiley.com/doi/10.1002/bjs.4933/abstract?deniedAccessCustomisedMessage=&userIsAuthenticated=false - This paper published in British Journal of Surgery, 2005, concludes "From a National Health Service perspective, LNF may be cost-saving after 8 years compared with maintenance PPI therapy for the treatment of GORD."

Hopefully, you'll get your assessment referral from surgical team soon.

Cheers
Chris

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: Sandra W
Date Posted: 18 Sep 2013 at 9:08am
Hi Chris,
 
Yes, it's good that you are getting a chance of a repeat fundo without having to go through all the usual rigmarole.  They already know you need this op, so carrying out tests would be pointless.  Nevertheless, some hospitals do seem to do their level best to put people off having the surgery, and it seems like they can find an endless supply of excuses to not even consider operating.  It's lucky that your local gastro department is more helpful than most; at least they try to offer a choice.
 
As to me, well, I have sent a message to my consultant asking to be considered for some sort of anti-reflux procedure; no reply yet, so I'll just have to hope for the best.  I really do need to get off the PPIs as soon as possible, since the side-effects, mainly bowel symptoms, are getting worse rather than better. 
 
With a bit of luck, you won't have to wait too long and will be back to normal in time for Christmas.  You mentioned in your last message that you are planning to go away in November.  Is that a cycling event, or just a holiday?
 
All the best,
 
Sandra.


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E-mail: swilliams888@hotmail.co.uk


Posted By: chrisrob
Date Posted: 18 Sep 2013 at 9:37am
Yes I'm away for most of November. But it's not really a holiday - just a change of scenery. My wife's son will be taking a holiday and needs someone to house sit and look after his two rather boisterous dogs (an old fashioned Golden Retriever and a Vizsla). But there's no way I could be taking them for walks directly after a fundo. (They like a couple of miles a day and, although there are fields where they are off lead, they do pull to get there.)

Hope you get your treatment arranged soon. I know we are lucky in Southampton to have such a fantastic team. But medics don't always like handing their patients over to surgeons: there's a bit of (friendly?) rivalry.

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: Sandra W
Date Posted: 18 Sep 2013 at 9:47am
Hi Chris,
 
Yes!!!  I have long since thought that medical specialists tend to see surgeons as "the enemy" and resent having to refer patients on for operations.  I think it's a bad and silly attitude - surely the whole point of healthcare is to work as a team to deliver the best care options based on patients' individual needs? 
 
I hope you enjoy your house-sitting, dog-walking break, and that you get your fundo soon.
 
All the best,
 
Sandra.


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E-mail: swilliams888@hotmail.co.uk


Posted By: DanJ
Date Posted: 21 Sep 2013 at 9:55am
Great news on no dysplasia Chris , hope you get your OP soon and it fits in with whats happening in your life!
all the best
Dan


Posted By: chrisrob
Date Posted: 08 Oct 2013 at 8:40am
An update on my "Road to Refundo".

The reflux cough is now getting me down. I feel the phlegm in my chest all the time and the smallest thing, be it taking a sip of water or catching a whiff of smoke in the air, can start me coughing. And when I start, I don't think I'm going to stop. It progressively gets more violent till I'm at the point of retching in attempting to evacuate all the phlegm and I reach the point of blacking out which is quite scary. Then slowly I come to with everything seeming to pulsate slowly.
And the aftermath leaves me tired, aching and breathless.

I know one shouldn't read a medical dictionary but I'm imagining I have developed bronchiectasis (which is also associated with oligozoospermia, which I have). I am trying to teach myself Active Cycle of Breathing Technique to help clear my lungs - though everything I read says it needs to be taught by a physiotherapist.

But my GP wasn't interested when I saw her a couple of weeks back. Her map of medicine for treatment of GORD and Barrett's only shows PPIs - which she imagined would help a cough!
I may have to see a different doctor to discuss my lung damage fears.

I hadn't heard from the surgeon so I phoned his secretary yesterday. She told me that presently I have a routine appointment which won't be until January 15th! I said the letter the medical team had written did ask for it to be as soon as possible. She found the letter and said she would speak with the surgeon today and get back to me.

I don't want to try queue jumping. I don't think it's fair that some people buy their way to quicker treatment at the cost of causing delays to those further down the queue and I feel, because, I have contributed all my working life to our excellent NHS health service (no matter how much it is being knocked for political reasons) I ought to be able to get the treatment I need without extra outlay. However, I'm now beginning to wonder whether I may reach the point where, from desperation, I consider "going private". But the more we abuse the system in that way, the more the NHS is undermined.

I am conflicted. Hopefully the surgeon's secretary will phone me today with some better news.
Otherwise I can imagine a protracted timetable: see the surgeon in clinic mid January who will then call for his own team to scope me (I'm imagining that would be late March) before even putting me on the surgical list which could take me to June - a whole year after my asking for this.

Sorry for the rant. Just feeling pretty useless at present.

Chris

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: jcombs99
Date Posted: 08 Oct 2013 at 10:44am
How can you abuse the system if you don't use it ? Why don't you go private and get back to a normal life . I got mine in 3 weeks .. That's why I hate the NHS(obamacare) to much RED TAPE and not enough action .Then the costs go Sky High .Our gov. shut down but they will give the gov workers back pay when they come back .Wish I had a deal like that.


Posted By: Sandra W
Date Posted: 09 Oct 2013 at 7:21am
Hi Chris,
 
Oh dear! I'm sorry to hear things are not going smoothly.  It is a big setback and an awful disappointment, especially after they led you to think your fundo would be sorted out fairly soon.  I hope you will get some better news from the surgeon very soon.
 
Yes, you are right about the private v NHS situation.  It's unfair that in this country "going private" means paying twice, since NHS contributions have already been paid.  The government ministers don't care because they don't have to - they just go private whenever it suits them, and the rest of us have to put up with all the cutbacks they make. 
 
I hope they work this out soon.  Good luck, and keep us posted.
 
All the best,
 
Sandra.
 


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E-mail: swilliams888@hotmail.co.uk


Posted By: chrisrob
Date Posted: 04 Dec 2013 at 12:39pm
Update.

I've just returned from seeing the surgeon. He's decided not to ask for a surgical endoscopy as the details from the medical endoscopy were good enough. He's also decided in my case not to require another 24hr pH manometry as my symptom and description and history were sufficient.
It will probably be another couple of months before I have the surgery. - hopefully end of February / beginning of March.
I've celebrated by booking my Peru cycle challenge for next October. (Should be fit enough again by then.)
Anyone wish to join me?

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: Sandra W
Date Posted: 04 Dec 2013 at 12:51pm
Hi Chris,
 
Very pleased to hear your excellent news.  Good luck, and hope you get the op early in the New Year.  If all goes well, you will be all sorted in time for the cycling.
 
All the best,
 
Sandra.


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E-mail: swilliams888@hotmail.co.uk


Posted By: chrisrob
Date Posted: 19 Dec 2013 at 12:04pm
Latest update.
Just had a letter from the hospital. They haven't actually given me a date for the surgery yet but they have given me an appointment for the pre-assessment clinic on 23rd January - so the operation can't be that much further off. The surgeon did say, when I saw him at the beginning of December, the waiting list was probably about 2 months.

23rd January is supposed to the inauguration day of a London support group - though it's already been postponed and I haven't heard any more recently. I had originally said I'd be happy to attend to give a short "inspiration" talk about having a patient support group. But they'll have to fend for themselves this time, I'm afraid.

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: Sandra W
Date Posted: 20 Dec 2013 at 1:36pm
Hi Chris,
 
Well, that's great news and I hope it won't be long now before you get your op.  Good luck with that.
 
I saw my consultant on 12th Dec and he has agreed (reluctantly!!!) do manometry & pH tests, so I should get an appointment about the end of Feb.  I'm not very hopeful, but I will give it a go.  Nothing to lose.
 
Meanwhile, I'm looking forward to Christmas and a New Year, and I am very pleased that I now have THREE websites!!!  LOL!!!  Government will be pleased...NOT!!!
 
All the best, and have a good Christmas & New Year.
 
Sandra.


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E-mail: swilliams888@hotmail.co.uk


Posted By: chrisrob
Date Posted: 23 Jan 2014 at 5:39pm
Had my pre-op assessment today.

At least my ECG was OK and, unless I hear otherwise in the next couple of days, I'm assuming there'll be nothing adverse in the bloods and MRSA tests etc.

Should get my op in a couple of weeks now. My surgeon's secretary was away this afternoon but another in the office didn't find a date for me but confirmed the surgeon's diary is relatively empty presently.

Whilst there a research nurse asked if I'd participate in the http://www.cancerresearchuk.org/cancer-help/trials/a-study-to-find-out-why-certain-people-develop-oesophageal-cancer-chopin - CHOPIN (CHemoprevention Of Premalignant IntestinalNeoplasia_) and IPOD (Inherited Predisposition of Oesophageal Diseases) trails. - Number one rule for anyone planning trials is to first decide on a cool acronym and then attempt to couple words to the inital letters.

It only amounted to my giving away more blood!

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: chrisrob
Date Posted: 24 Jan 2014 at 3:56pm
I am rarely able to have a lie-in.
I'm usually up between 7:00 and 7:30 and if I try to stay in bed longer I just toss and turn and am uncomfortable.
However, this morning I managed it - only to be awoken at 9:00am by my phone.
Thinking it was the alarm, I cancelled it and wondered why I had an alarm set. Then I realised it was a missed phone call.
A message was left, "Phone Pre-op assessment".

Anxiety sets in. Have they found something that will mean cancelling my operation? I phone back.
"We need you to have another blood test." I had loads done yesterday. In addition to the "normal" full range, I had had 3 large phials taken for analysis for the "ChOPIN" study - looking for a genetic factor in the development of Barrett's Oesophagus.

When I got to the hospital it was only to have my liver function test repeated as it had clotted before the pathologist had had a chance t analyse it.
I know I am thick blooded (possible polycyctheamia) - which may be an advantage in the high altitude of the Andes in October?

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: chrisrob
Date Posted: 03 Feb 2014 at 3:44pm
I phoned the surgeon's secretary on Friday to see if I had a date for surgery yet but had to leave a message on her answerphone.
She phoned me back today to say no date has been arranged yet. Furthermore, I learned that pre-op assessments are valid for upto 3 months!
I know this is called "elective" surgery rather than "emergency" or "routine" but that shouldn't relegate it to the bottom of the pile.

Feeling particularly rough and tired today. My wife said it's hardly surprising as I was coughing all night. Time was I'd sit up for a couple of hours coughing. Now it seems I'm doing it i my sleep. I told the secretary that and she'll relay it to my surgeon. Perhaps he'll push me up the list?

It's frustrating as there are so many things coming up that I haven't been able to commit to. I'm now making provisional plans with the proviso I may need to postpone at a moments notice.

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: Sandra W
Date Posted: 04 Feb 2014 at 9:17am
Oh dear!!! Not good news, and it's a big disappointment.  But at least they haven't completely forgotten your op and put you on a list where you have no idea of when to expect the op.  With a bit of luck it will definitely be within the 3 months, so just hang in there.  At least they have definitely agreed to do your fundo - you'll get there.  Good luck.
 
Sandra.


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E-mail: swilliams888@hotmail.co.uk


Posted By: jcombs99
Date Posted: 04 Feb 2014 at 12:07pm
Sandra (you would know)
   What are the time limits in the NHS for treatments .What can you do if it gos over that time limit. I'll bet it useless to complain because the gov controls everything.


Posted By: Sandra W
Date Posted: 04 Feb 2014 at 12:22pm
Hi Jeff,
 
Ha!!! Well, there is an 18 week target from referral to seeing the consultant, but once you've been put on a waiting list for an op you basically just have to wait unless your problem becomes really urgent or you opt to try going elsewhere.  Gov cuts getting very bad here, so not much chance of anything improving yet.  Only other option is to go private, but it's very expensive and not really worthwhile unless the problem is really urgent to you.
 
Hope all well with you.
 
Best,
 
Sandra.


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E-mail: swilliams888@hotmail.co.uk


Posted By: chrisrob
Date Posted: 04 Feb 2014 at 12:30pm
The last (labour) government introduced the 18 weeks rule.
The present (conservative / liberal democrat coalition) removed that obligation but it had already been setb within NHS constitution.

However, the 18 weeks maximum time refers to the time between a GP referral and being seen by a consultant (usually just a clinic appointment. You then go on a waiting list appropriate to the treatment option for your condition. Operations are rated emergency, routine and elective - in that order. Fundoplication is regarded as "elective" so bottom of the pile.

http://www.nhs.uk/choiceintheNHS/Rightsandpledges/Waitingtimes/Pages/Guide%20to%20waiting%20times.aspx - Read more about NHS waiting times pledge, here.

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: Sandra W
Date Posted: 04 Feb 2014 at 12:35pm
They still have 18 week pathway and employ admin "coordinators" to manage the targets.

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E-mail: swilliams888@hotmail.co.uk


Posted By: jcombs99
Date Posted: 04 Feb 2014 at 12:56pm
Thanks interesting reading. I like the pledge part to help is that the same as we will try . The 2 week window on Cancer referral my sister got cut on the next day for colon cancer @ Mayo ..The only part I really like is " You have the right to choose which hospital or clinic you can go if it meets the NHS standards and cost". Because you can pick the better treatment place . Most yanks have no idea what obamacare is and are paying the huge cost now but I do because I've been on this website for years. I'm sure I could get the most out of the NHS or obamacare but how about the old with no bus. back round I think they could get lost in the system or fall though the cracks .Same old story save your money because you may need it to get quicker better treatment that the NHS feels isn't a big deal.


Posted By: chrisrob
Date Posted: 15 Apr 2014 at 2:59pm
According to the surgeons'secretary when I phoned yet again a couple of weeks ago, the 18 weeks RTT (Referral To Treatment) time in my case is measured from when I see surgeon in clinic to when I receive the operation.
That 18 weeks expired last week which means the hospital will be fined.
I do know, from talking with the surgeon, they had an influx of cancer patients who obviously had to take priority.

We do have excellent surgeons at Southampton pioneering minimally invasive surgery for oesophagectomies. I met one such patient just 2 weeks after he'd had his oesophagus removed and, instead of the large "shark bite" scar, there were just a few puncture wounds from his keyhole "Ivor Lewis".
His surgeon, Jamie Kelly, will be talking about this procedure at Barrett's Wessex AGM in July.

BUT the good news is: I eventually received the phone call I've been waiting for today.   
I have to report at 7:30 am on Monday 28th April with an overnight bag and expect to return home the next day.


It will allow me 2 weeks recovery before I'm due to travel to Westminster to talk with MPs about Barrett's Oesophagus over dinner. (Expect I'll be able to just have soup.)

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: Sandra W
Date Posted: 17 Apr 2014 at 11:01am
Hi Chris,
 
Pleased to hear you've finally got a date for the op.  At least you're making orogress.  Good luck, hope all goes well and that you'll be feeling back to normal soon.
 
I saw GP this morning, and he has given me a copy of the manometry & pH test results.  There is evidence of some reflux, including some that is reaching the upper oesophagus.
Unfortunately, the pressure readings were not good, and there was some spasm in the oesophagus as well as low pressures.
 
It's hard to say if the consultant will agree to refer me for surgery, but I think the probability is that he will not do that - at 49, I'm worth too much in PPI profits over the remaining "x" years of my life.
 
Haven't heard any more about the trial, but I'm sure the message in my letter has made the situation as regards their false info very, very clear.
 
Good luck for the op.
 
Will let you know if any news with mine.
 
All the best,
 
Sandra.


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E-mail: swilliams888@hotmail.co.uk


Posted By: chrisrob
Date Posted: 17 Apr 2014 at 11:08am
Hi Sandra,

Thanks.
Keep pushing for what you want. It costs NHS a lot of money to keep you on PPIs. One of the gastroenterologists on Barrett's Wessex committee published a paper a few years ago looking at cost savings of NHS of fundo over lifetime PPIs.
Unfortunately there are not enough surgeons and workload can be erratic to high. My surgery is a couple of months later than my surgeon would have liked because he had an influx of cancer patients who obviously had to take priority.

All the best
Chris

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: teacher man
Date Posted: 17 Apr 2014 at 6:05pm
Hi Chris, can you ask your docs and surgeons what they have read into the latest study on ppi's?
I have an appointment with my GI next Wednesday and I will ask what he thinks of it as well.
Good luck with your nissen. I too am looking into surgery but will wait a bit. However, I will start to look for the best surgeon in my area,


Posted By: chrisrob
Date Posted: 17 Apr 2014 at 6:17pm
Is there any specific research you are referring to?
There have been so many papers recently.
(A library of links is maintained by Barrett's Wessex website here:
https://sites.google.com/site/barrettswessex/news/research - News tab, Research subheading.

It would really be a question for our gastroenterology consultants (medics) rather than the surgeons.

I could email one if there's anything immediate but it's always something that's worth discussing at our Annual meeting when there's lots of time for Q & A with a whole team of experts. But that's not until 25th June.
I'm not expecting you to fly over for it but if you want to think up any questions for the panel, you can send them to me.

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: teacher man
Date Posted: 18 Apr 2014 at 3:21pm
Thanks Chris, I was wondering what they think of the latest study on ppi's not being effective in combating EC. And how they are viewing this new study with the other study in Denmark showing a 70 percent decrease .
I am in the process of getting new insurance so I am talking with insurance companies and my docs office. I called yesterday but he was teaching at Stanford university. That made me feel good. He is one smart old man. I see him next we'd and I will ask what he and his peers at Stanford think about it. Stanford gets more money for research than any other university in the world. At least they did,last year. But, getting a few point from several GIs is better. It seems everyone sees this as the sky is falling yet no one has reported making an appointment with the docs to get their opinion. Just a bunch of fear mongering


Posted By: chrisrob
Date Posted: 19 Apr 2014 at 10:52am
A couple of years ago, I discussed with our gastro consultants at SGH whether continued prescription of PPIs for patients who were apparently no longer symptomatic for acid reflux. I was told that although there were conflicting papers (even then) on the chemoprotective efficacy of remaining on them, their considered view was they were more likely to do more good than harm and recommended continuation.

I believe the papers you are referring to are these:
http://www.ncbi.nlm.nih.gov/pubmed/24617286 - "Proton pump inhibitor use may not prevent high-grade dysplasia and oesophageal adenocarcinoma in Barrett's oesophagus: a nationwide study of 9883 patients."
http://gut.bmj.com/content/early/2013/11/12/gutjnl-2013-305997 - Acid-suppressive medications and risk of oesophageal adenocarcinoma in patients with Barrett's oesophagus: a systematic review and meta-analysis
which appear to contradict each other but the studies followed different approaches.

It does seem that for every piece of research providing one answer there is another that appears to contradict it.

If you check out the https://sites.google.com/site/barrettswessex/news/research - Research News page on the Barrett's Wessex website and the linked archive list at the bottom of that long list, you can dig out many studies that at first glance appear contradictory. The latest is in regard to the use of aspirin. Some trials (eg AspECT) appear to show a positive chemoprotective effect whilst the latest appears to show the opposite.

I had to chide one American newspaper recently who were actually recommending any of their readers with GERD take NSAIDs daily to prevent cancer. - Anyone considering regular aspirin should only take it in combination with a PPI at a dose regulated and monitored by their GP or GI consultant. Unmonitored use of aspirin or ibuprofen may cause more harm than good by overstimulation of acid secretion.

But PPI use is hotly debated, even more so on American forums, where, due to unscrupulous advertising (and, I suggest, payments by drugs companies to doctors) over prescription (and of the most expensive drugs where the cheaper ones are no less effective - and possibly, in some instances better) has recently become an issue. (Probably routed out by the Affordable Care Act? - perhaps Jeff has views on that?)

Depending upon time and other questions raised by attendees, this could form an interesting discussion during Q&As at the annual meeting of Barrett's Wessex in June.

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: jcombs99
Date Posted: 19 Apr 2014 at 11:35am
You can find a study(data) to support anything .I had a few doctors who almost killed me at the least now if those Crazy doctors(my doctor called them that) did a study would you trust it .What do think Wall street did 10 years ago they talked people in doing anything they wanted them to do .Remember your dealing with people who are very well schooled and there's MONEY to be made ..Don't blame the Doc if you don't take your PPI's and you get HGD and I have seen it .

Pill taker


Posted By: teacher man
Date Posted: 19 Apr 2014 at 2:58pm
Chris, you said some ppi's are better and maybe less expensive. What do you think is the better one based on your readings. I am trying to get my protonix continued but the insurance company is putting up,a fight. I should be able to get it but still have not received it. I may have to go on another one.


Posted By: jcombs99
Date Posted: 19 Apr 2014 at 3:10pm
Teach your doc can put in a special Request like mine did to get the drug you want . PRICE means nothing if it works use anything .

But I love CHEAP !!!

Cheap Jeff

Can I borrow your coast highway for a drive ??


Posted By: chrisrob
Date Posted: 19 Apr 2014 at 3:54pm
Sorry Teacherman, I didn't mean to mislead you.

I wasn't intending to claim some PPIs are better per se but that they may be better tolerated.

Some people tolerate one PPI more than another, so it's better for them.
All PPIs are as effective as each other in suppressing acid.
You may see a comparison and costs table at the bottom of this page: https://sites.google.com/site/barrettswessex/treatment/drugs - Barrett's Wessex / Treatment / Drugs
At the very bottom is a cost comparison of some of the drugs for USA.

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: Pyrrhonist
Date Posted: 20 Apr 2014 at 11:09am
There is indeed a lamentable shortage of facts. The population-based studies all seem to inadequately state the conditions: were the patients on PPIs? What dosages? How long? What of studies of normal, healthy control-groups.

This makes most of the papers opinions rather than proper scientific investigations. There is very strong evidence of what my old chemistry teacher used to call "The will of the investigator" affecting the results. They find exactly what they expect to find! Many of the apparently authoritative papers are actually assessments of other papers, rather that real research, so doubly weighted by "The will of the investigator"!

This weighting makes me tend to believe preferentially in papers which seem to contradict "common opinion" - historically such scientific papers in all fields have usually tended to be correct! Likely to be true also in medicine!

I cannot claim to be immune to this "will of the investigator" - I, like everyone else here, lack the ability to make any original research! However I know what I experienced when on PPIs and when experimenting with the dosage. Personal experience tells me that PPI usage causes bile reflux. It also tells me that regurgitated bile is far, far more unpleasant than regurgitated acid.

I am lucky in being able to come of PPIs. I now know I have a hiatal hernia, so reflux. So I am much more aware of gastric contents than ever I was before diagnosis. I therefore take antacids at much earlier indications. I am as a result much healthier now. Whatever the truth about the gall bladder and bile, there are other long-term nasty side effects to long-term acid suppression.

The likely facts seem to be that:
     Barrett's is not a necessary precondition for adenocarcinoma, but often proceeds the condition.
     Bile is not necessary for the development of Barrett's - but almost certainly accelerates the development.
     The presence of Barrett's is probably a lot more common in the general population than anyone has realised. Barrett's is asymptomatic! A post-mortem examination of a wide statistical sample would be necessary to establish the true incidence.
     Bile in the stomach is not a normal occurrence in a healthy person. Measurements and observations do not often take place on healthy people: most of th patients the medical profession see are, of necessity, unhealthy. This tends to skew the viewpoint of all doctors!
     Progression from Barrett's (or even without Barrett's) is a lot less likely than was at first thought.

The Northern Irish study of 8,522 Barrett's 'sufferers' over a 7 year period found that only 0.22% of Barrett's cases progressed to HGD or cancer per year. That is one person in 450 per year. A similar study on non-Barrett's sufferers might find a similar cancer rate: we cannot tell. In any event - to find the true progression from Barrett's - we must know the progression without Barrett's so the 1 in 450 is of necessity an over-estimate of the dangers of Barrett's!

It is widely accepted that worry causes excess acid production and other gastric upsets.

So to my mind, to describe Barretts as pre-cancerous is a distortion of facts. To do so causes huge worry to sufferers and that worry exacerbates the real problem - acid reflux. Sufferers are then prescribed drugs which, long-term, cause bile in the refluxate. That bile is probably in many cases the real cause of the progression. So the statement that Barrett's is pre-cancerous seems to me to be something of a self-fulfilling prophecy!


One can assume however that in the Northern Ireland study almost all of the patients were on PPIs. So the 1 in 450 per year is actually pretty much a worst-case scenario!

In short - if you can learn to control reflux by whatever means - diet, will power, hypnosis, standard neutralising antacids, placebos or whatever - then that is the best option. If you cannot, then PPIs are the next best option.


Yes - I would love to discuss the implications with good consultants - but the consultants at Addenbrookes are not open to discussion. They are too busy studying the mechanism of progression!



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Richard Torrens. - See my www site for my own experiences with Barrett's and reflux etc.


Posted By: teacher man
Date Posted: 20 Apr 2014 at 2:59pm
H


Posted By: chrisrob
Date Posted: 21 Apr 2014 at 10:55am
"The presence of Barrett's is probably a lot more common in the general population than anyone has realised. Barrett's is asymptomatic! A post-mortem examination of a wide statistical sample would be necessary to establish the true incidence."

I don't know the sample size but an American cadaver study some years ago found that at death, 1 in 70 of the population of the US had Barrett's. Although referred to within this excellent (but outdated) site: http://barrettsinfo.com/ - barrettsinfo.com I haven't been able to find the original published work. However, applying this to the UK population, a few years ago, I came up with a figure of probably 1 million with Barrett's in UK - at a time when 450,000 was the accepted figure. After discussing it with Laurance Lovatt, he changed his GastroLondon site to reflect that figure - a figure Rebecca Fitzgerald now also accepts.
However, it could even be more prevalent than that. Twice as many people die of OAC in US than UK and they have 5 times the population. So it could be there are two and half times as many as we think.

"Barrett's is not a necessary precondition for adenocarcinoma, but often proceeds the condition. ... So to my mind, to describe Barretts as pre-cancerous is a distortion of facts."

This is why I always speak of Barrett's as potentially pre-cancerous but the fact remains Barrett's is the only known pre-cancerous lesion for OAC.

"Bile in the stomach is not a normal occurrence in a healthy person."
I would modify this by adding "Persistent" at the beginning. It has been well known and accepted by the medical profession for 180 years since Dr William beaumont's paper, that "when the use of fat or oily food has been persevered with for some time" a release of bile may be permitted to backflow through the pyloric sphincter to assist with breaking up fatty material immune to acid dissolution to become more manageable for the duodenum.

"Bile is not necessary for the development of Barrett's - but almost certainly accelerates the development."
We do not know definitively whether bile is necessary for the development of Barrett's but recent studies have appeared to support that hypothesis.
In this study http://www.urmc.rochester.edu/news/story/index.cfm?id=3476 - "Bile – not Acid – is Bad Guy in Triggering Precancerous Condition Associated with Reflux Disease" , Dr Jeffery Peters says: “The main leap this study makes is that normal esophageal cell growth must be turned off and intestinal cell growth must be turned on in order for the disease to take hold,” noted Peters, who is president elect of the International Society of Diseases of the Esophagus. “We found that bile promotes both processes.”
This was further modified in this study: http://www.ncbi.nlm.nih.gov/pubmed/23921815 - Bile acid at low pH reduces squamous differentiation and activates EGFR signaling in esophageal squamous cells in 3-D culture. showing the action of bile [and] acid produce Barrett's Oesophagus.

The risk factors of progression were discussed in great depth during December 2013 and January 2014 and used the latest analyses of the UK Barrett's registry and input from Prof Tony Watson (who set up UKBOR), Dr Christine Caygill, who maintains it and Cancer Research UK who attempt to keep their fingers on all these statistics, when we drew up the https://docs.google.com/viewer?a=v&pid=sites&srcid=ZGVmYXVsdGRvbWFpbnxiYXJyZXR0c3dlc3NleHxneDo1OTY1YTNkZGQ1MmYwMmRh - Patient Information leaflet for Action Against Heartburn.

The good news is http://www.ncbi.nlm.nih.gov/pubmed/24738722 - The incidence of Barrett's oesophagus and oesophageal adenocarcinoma in the United Kingdom and the Netherlands is levelling off.
Meanwhile, World cancer statistics show http://www.wcrf-uk.org/research/cancer_statistics/oesophageal_cancer_rates.php - the UK has the 26th highest oesophageal cancer rate and every year 7 of every 100,000 people in the UK develop oesophageal cancer.

It is still something to take very seriously - which I will be doing when I meet with a group of MPs in three weeks' time at a dinner at Westminster - which may lead to the setting up of an all-party parliamentary commission. OAC is still the fifth biggest killer amongst the cancers in this country - killing, on average, one person an hour.

Although I am frustrated by the long wait for my fundoplication repair, I am humbled to realise the delay was occasioned because my surgeon had to deal with an influx of cancer patients - whose very lives depended on them having swift treatment.

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: jcombs99
Date Posted: 21 Apr 2014 at 11:11am
What's the number on the French for Barrettes and OC I thing they eat why better then the yanks .But they do SMOKE a whole lot which upsets the stomach.


Posted By: Pyrrhonist
Date Posted: 21 Apr 2014 at 1:11pm
> > "Bile in the stomach is not a normal occurrence in a healthy person."
> I would modify this by adding "Persistent" at the beginning. It has been well known and accepted by the medical profession for 180 years since Dr William beaumont's paper, that "when the use of fat or oily food has been persevered with for some time" a release of bile may be permitted to backflow through the pyloric sphincter to assist with breaking up fatty material immune to acid dissolution to become more manageable for the duodenum.

Fair enough. We simply do not know.However it is pretty clear that humans are vegetarians still evolving to eat meat. Excess meat in the diet is proven to be bad. Though we are apparently well adapted to fish and other sea food.Essentially - the foods we have evolved to eat are all pretty low in fats so enough fat in the diet to upset normal bile release must be (evolutionary-wise) a very rare event. Our stomachs and oesophagi are unlikely to be at all adapted to cope with it.There is quite a lot of (anecdotal) evidence that PPI use is associated with stomach cancers. There are guesses as to the cause. My guess would be bile!

< OAC is still the fifth biggest killer amongst the cancers in this country - killing, on average, one person an hour.

I pity that poor person - why can't they let him rest in peace?

Joking aside, I cannot disagree with the above. But - if PPIs are the wonder drug everyone assumes - how is it that OEC rates have been increasing so much despite the increasing use of PPIs?
That's a question which demands an answer!

If (and I admit that's a big IF) I am right - OEC has been increasing because of the increasing use of PPIs. The mechanism would have to be bile reflux caused by the PPIs. Bile reflux (from my own experience) only becomes a problem with long-term PPI use, as the liver metabolises more quickly so the blood concentration falls more quickly so the gallbladder starts to recover normal use and erratically releases bile.

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Richard Torrens. - See my www site for my own experiences with Barrett's and reflux etc.


Posted By: chrisrob
Date Posted: 21 Apr 2014 at 2:08pm
The question about increasing OAC despite PPIs is actually the reverse of what appears at first.

It typically can take 20 years for Barrett's to develop (or at least the diagnosis of such). Typically young men in their 20's have experienced heartburn which they've ignored and the symptoms seem to go away only to recur about 20 years later. (Facts from UKBOR.) (Which is why men in their early 50's are the most common statistic.)
(Not wishing to be sexist but 30 years ago, lads' behaviour was more prone to this than the girls'.)

PPIs have been available for about 30 years and regularly prescribed for 20-25 years. This could actually be the reason the incidence of BO and OAC is falling off.

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: chrisrob
Date Posted: 21 Apr 2014 at 2:16pm
Hi Jeff,
Les Belles Françaises. They don't show on the top 50 countries chart (and neither does USA!). I'm surprised Belgium's there, though.
Smoking is another of those contentious issues.

Whereas smoking may increase reflux http://www.medscape.com/viewarticle/820897?src=wnl_edit_tpal&uac=121783PV - (Tobacco Smoking Cessation and Improved Gastroesophageal Reflux) it doesn't increase risk of developing Barrett's. http://www.ncbi.nlm.nih.gov/pubmed/24114046 - (No significant effects of smoking or alcohol consumption on risk of Barrett's esophagus.)

but, as that last study concludes, "Smoking and alcohol were not strong or consistent risk factors for BE. The likely role of smoking in increasing risk of EAC is through promoting progression from BE to cancer."

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: Pyrrhonist
Date Posted: 22 Apr 2014 at 2:28pm
Originally posted by chrisrob

The question about increasing OAC despite PPIs is actually the reverse of what appears at first.It typically can take 20 years for Barrett's to develop (or at least the diagnosis of such). Typically young men in their 20's have experienced heartburn which they've ignored and the symptoms seem to go away only to recur about 20 years later.


I can quite believe the 20 years. I was divorced about 28 years ago. Before that I had severe heatburn caused by worry. I was prescribed Libraxin - a relaxant, not used nowadays. I suspect that was when the Barrett's may have started.

Reflux gradually got worse some time aftr that as I put on weight. In early 2008 I was diagnosed with 9cm Barrett's but no detectable dysplasia, despite the consultant/endooscopist saying in his report that he anticipated at least hgd.

The chance of getting cancer is a combination of heredity, diet and environment. Reflux is the environment bit.

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Richard Torrens. - See my www site for my own experiences with Barrett's and reflux etc.


Posted By: jcombs99
Date Posted: 22 Apr 2014 at 2:46pm
RT
   That's the only post you ever posted I agreed with .My friends (which will ALWAYS tell you the true) TOAD me stop what your doing or you will die .I was up about 20/7 in 2002 working making a whole lot but.

Cheap Jeff


Posted By: chrisrob
Date Posted: 22 Apr 2014 at 6:09pm
Teacherman,

It's not only visitors to this forum (and facebook groups) who argue about the merits of PPIs as
http://www.gastroendonews.com/ViewArticle.aspx?d=In%2Bthe%2BNews&d_id=187&i=April+2014&i_id=1048&a_id=26309 - this article just published in Gastroenterology and Endoscopy News shows.

“The present study provides relatively good evidence that PPI use prevents progression to EAC in BE patients,” Dr. Singh concluded.

Thomas L. Vaughan, MD, MPH, professor of epidemiology at the University of Washington and program head of epidemiology at Fred Hutchinson Cancer Research Center, in Seattle, was less convinced. He indicated that the potential effect of PPI use on BE and cancer is complex.

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: teacher man
Date Posted: 22 Apr 2014 at 11:41pm
Thanks Chris, over all very positive report. It got me thinking. They reported one did better the longer they are on ppi's. Better odds. Yet, there is the final sentence. I see my doc tomorrow.
I would like to ask him some questions. What questions have you thought to be important? Anyone on the board can answer and I will ask. My doc teaches at Stanford and is the chief editor for a GI endoscopy magazine for doctors. I trust him and his research team.
Things I will ask are fish test, news on ablation success, his thoughts on the new study showing no positive effects, ( however, I am sure he will point on this newest study you posted. The last time I had questions he pointed out many of the same reports you have shown me.
LInx, nissen anyone with questions feel free to post and I will ask


Posted By: teacher man
Date Posted: 23 Apr 2014 at 2:32am
This new report got me thinking. When I started taking ppi's I had horrible side effects. But stuck with it based on fear and doctors orders. My system has leveled off now a days. In the report it said people did better the longer they are on ppi's....or the odds got better.
My uneducated personal observation from my own experience is that I had bile blocking my system. Sludge so backed up that when I took the ppi's My system was horribly out of balance thus causing issues. Maybe even creating the Barrett's. I had an endoscopy about a year apart. The first one there was no Barrett's but then the second one I had Barrett's after a year of on and off again ppi's. Slowly but surely my system worked things out. Especially after I used probiotics and flax seed fiber. Plus, lots of carrot juice with the fiber. I kind of cleaned my liver out.
It is possible if I had HGD and had the samething happen it could have pushed my sytem over the edge to EC. Perhaps those of us with bad side effects from ppi's is based on an over abundance of bile sludge blocking our gallbladder and liver. Once it gets cleaned out with proper diet the ppi's work better?   


Posted By: jcombs99
Date Posted: 23 Apr 2014 at 1:29pm
Teach
    That's great your feeling better maybe do some blood tests .Remember the EGD sees all tells all in the way of the E or O ...Whens your next ..


Posted By: teacher man
Date Posted: 23 Apr 2014 at 3:01pm
What blood test would you ask for? I have had tests but maybe haven't asked for all the tests that I should ask for.
My next endoscopy will be later next month or I'll wait til the summer. Unless he says I need one now. I doubt he will but?! He is proactive. Ablation, endoscopies ect....


Posted By: jcombs99
Date Posted: 23 Apr 2014 at 3:13pm
I don't know start looking maybe Chris could help . I'm like 4k miles away and I don't like your health posts.I sense something more , my 6th sense saved my ass and my bubbies too SO GO LOOKING ..Your young I'm old try to get that way .

Jeff


Posted By: chrisrob
Date Posted: 23 Apr 2014 at 3:48pm
Uh ho. So what blood tests could anyone ask for?
If you're worried about possible side effects of PPIs, I suppose you could ask for full blood count - iron and haemoglobin levels, magnesium, calcium, gastrin?

I've never really given it much thought. Years ago, when I'd been diagnosed as anaemic and was on iron supplemenst for a year (prior to my first fundoplication), I asked my doc if she'd order a gastrin test and she just said Whatever for? I should have been more assertive. I didn't dare ask for a magnesium test - though I was symptomatically hypomagnesaemic. That same doctor is now concerned I am polycythaemic (too many red blood cells). I have suggested it's because I don't drink enough (as it refluxes immediately) and she retorted, "Most of my older patients don't drink enough!", or because I'm hypoxic frim aspirated refluxate (which she completely ignored) or a possible rebound from having been anaemic previously. To which she responded, "You weren't anaemic in 2009!" (No! Because I had been on iron supplementation!) - Needless to say I seek out a different GP at my practice if ever I need to see one.

If RT is reading this, have you ever found any research linking hypergastrinemia with cholecystitis? (Just looking for any possible links between high dose PPIs and gall bladder problems.)

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: Pyrrhonist
Date Posted: 23 Apr 2014 at 5:39pm
> If RT is reading this, have you ever found any research linking
> hypergastrinemia with cholecystitis? (Just looking for any
> possible links between high dose PPIs and gall bladder problems.)

Gastrin is only one of a huge range of interconnected hormones:
Cholesystokynin is the one that controls gall-bladder emptying
Secretin
Ghrelin
Motilin
Gastric inhibitory polypeptide

plus, probably, a whole raft of fat-related hormones grouped as adepokines.

See
http://www.vivo.colostate.edu/hbooks/pathphys/endocrine/gi/index.html
for more on the subject.

Considering how complex a chemical system this all is, and how fundamental to its operation is stomach acid, the astonishing thing is that PPIs cause so few problems. It's also notable how many holes there are in our knowledge of the endocrin system.

So yes - links certainly exist! The mechanism whereby PPIs affect gall-blader is unclear, but it is probably via Cholesystokynin

-------------
Richard Torrens. - See my www site for my own experiences with Barrett's and reflux etc.


Posted By: teacher man
Date Posted: 23 Apr 2014 at 6:45pm
Great doctor appointments spoke with him for over an hour. I won't bore you all with my health posts. ..........lol However, he did say MOST of his Barrett's patients never really change their diets or lifestyle. They take the pill and think that will do it. They remain behind their computers and stay over weight. A good Diet and lifestyle changes increase the likely hood Barrett's NEVER goes to EC . He believes the ppi's are saviing lives. I asked him this specific question.   How many of your patients never changed their lifestyle or eating habits. ".
he did say there is a very large and exciting study being done in England right now and it should be out in about a year to a year and half.
As it is,he said I am doing everything in my power to be as healthy as I can be. I will have an endoscopy anytime I want he said. So, I will schedule that for later in the spring or summer but my last endo was great he said. Ablation is showing great promise. First, I will have another ph study while on one ppi. But since everything has improved so much with my reflux and diet I will wait til for now.
May you all have a blessed journey. Bye for now. Back in a year or so to see how things are going. Thank you Chris for running a very very informative site.
Good luck to you all.


Posted By: chrisrob
Date Posted: 01 May 2014 at 11:01am
Good luck and all the best TeacherMan.


Well, my road has been travelled.

Shortly after 7:00 am on Monday morning I presented myself at Surgical day unit as per instructions and it wasn't long before I was in the lovely white support stockings and open backed gown.
The surgeon's registrar saw me. He'd be assisting with the operation and I was first on the list.

A nice touch. An upper GI surgical student I'd met a few weeks ago who has gathered a small team to run the Great South Run for Barrett's Wessex in October, dropped in to see me to wish me well.
The surgeon came to see me. I was actually to be his number 2 procedure as he had a small implantation to do first. (Bravo takes about half an hour to do.)
And the anaesthetist saw me.

At 10:00 I went into theatre. At 12:00 I was on the recovery ward.
Southampton is a great hospital with excellent staff but never enough beds. Anyone who has read my experiences of my first fundoplication or my cholecystectomy will understand my feeling of déjà vu when I learned there wasn't a bed for me.
My surgeon saw me and said he was pleased at how it had gone. He was in London the next two days so it would be his registrar who'd see me on the ward but the other surgeons (whom I know) would be available if there were any complications.
But it was quiet and calm in recovery. There was a bit of bruised and burning feeling from the new incisions but if I lay still I was OK. And all I wanted to do was lie still and rest.
It wasn't until 8:00pm they eventually found me a bed. Not on the upper GI ward but at least somewhere with a lovely cheery nurse and caring staff.

I won't bore everyone with a long account. I will be adding a page to my personal website in a few days if anyone wants the gory details.
To cut a long story short, I was discharged at 6:00pm last night (Wednesday) after a 2 day stay and now on the road to recovery.

The cough has gone. I can be a little sore if I move without thinking and uncomfortable if I try to drink without thinking - it slowly winds down the plug hole with air wanting to come back that can't. (It can sometimes seep back out - not a burp as such.)
I must take things carefully but I'm told I ought to be able to be back on my bike within 4 weeks.

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: Pyrrhonist
Date Posted: 04 May 2014 at 9:31am
> The cough has gone.

A cough is the main symptom I have (I am not on PPIs). There are cough receptors in the oesophagus and clearly these are sensitive to irritation from acid or (as I found ) to bile.

There is very little information findable about where these cough sensors are, but I think they are fairly high in the oesophagus. This would probably make sense as a cough would do little for the lower oesophagus, but starting to cough
before reflux reached the airways could make sense.

Whenever I feel this cough I take straight antacids. Sodium bicarbonate is quick, calcium carbonate not so quick.

I find Gaviscon does is not quite so effective, but can be useful - I use the cheaper Acidex equivalent.

Good luck with your refundo.


-------------
Richard Torrens. - See my www site for my own experiences with Barrett's and reflux etc.


Posted By: chrisrob
Date Posted: 04 May 2014 at 11:01am
Aspiration of refluxate is something that has to be taken seriously.

There used to be a theory which still persists that cough may be caused by excess acid in the stomach triggering a reflex via the vagus nerve - though I don't understand why the body would wish to react in this way.

A study to demonstrate this found 20% of patients with reflux cough reported their symptoms were reduced by the use of PPIs - which means 80% didn't and for some of those that did it may have been a placebo effect.

Using my own experiences both pre- and post- op on two occasions, I have been able to make a number of observations.

1. As we know, high level PPIs over a long period, inducing hypochlorhydria results in mineral and vitamin depletion. (Prior first fundo I was anaemic, probably hypomagnesaemic and hypocalcaemic. After fundo and off meds, my energy and life returned.)

2. The chronic cough I had before my first fundo, and even worse chronic cough I had prior to this repair ceased after fudnoplication.

3. Other effects of aspirated reflux. We know about the build up of mucus in the throat, the taste in the mouth, catarrhal symptoms, the effect on the sinuses and, via the Eustachian tubes on the ears. (Symptoms I have had all my life and only in within the last 20 years of studying this have discovered were most probably due to aspirated reflux.) Most of these symptoms went or reduced considerably after my first fundo only to gradually reappear during the last year and, although it's early days, seem to be considerably reduced or non-existent again.

I had suspected my dry eyes were also made worse by this aspirated reflux - probably processed in some way via the paranasal sinusus and lacrimal sacs. Indeed it had been suggested to me that I may have Sjögren's syndrome though it's uncommon in men and an unreliable blood test suggested otherwise. And on other forums I discovered other GORD sufferers with suspected Sjögren's. BUt when I discussed this with some of my gastroenterologist colleagues they rejected the idea there was any connection saying when we have one major condition, we are often likely to conclude other lesser conditions we may have coincidentally are related.

From trawelling published works I found a large number of people with Sjögren's also had Barrett's - which made sense as the low mucosal production within the oesophagus could be contributory.

My dry eyes were getting bad this last year. I felt I noted a correlation with the days when the cough was bad.
I initially had been using hypromellose but as that was ineffective, my doctor switched me to carmellose which wasn't much better. Even after using copious amounts before going to bed, I'd wake up in the night needing to use my finger nails to scrape away the hard crystals that had formed on the insides of my eyelids.

Although it's early days still, I haven't used the carmellose and have only had the minimal "sleep sand" that most of us get in the mornings.

I don't wish to exult about fundo too much as it isn't the answer for many sufferers. Also post op, there is discomfort. 6 days after the operation, I am in discomfort if I breathe deeply including yawning or coughing (normal cough not reflux cough). I intend today to walk outside a short way. I intended to do that yesterday but walking to the kitchen was exhausting. When I move my shoulders ache still (resultant effect from filling the abdomen with air for the procedure). But I know these symptoms are gradually dissipating and I heal quickly.
And I will be fit enough to travel (by train) to London in a week's time to meet with MPs over dinner at Westminster (probably soup only) to discuss raising awareness of Barrett's Oesophagus.

Following the failure of my previous wrap, I decided to try and manage my acid with H2RAs and Gaviscon rather than PPIs. By experimenting with timing (150mg is effective for about 12 hours), I felt I could permit acid for some of the day (unlike the 24hr effect of the PPI) and avoid anaemia. (H2 blockers are not as good as PPIs and I did experience heartburn after meals when I needed the Gaviscon)
My strategy appeared to work and I was actually found to be polycythaemic instead. (This I reasoned to be due to partial dehydration (even a teaspoon of water would immediately reflux and aspirate) and/or hypoxia due to the aspirated refluxate and consequential excess mucus in the lungs.) My haemoglobin levels at the last blood test before discharging me, after being on saline drip for a while and drinking copiously, together with clear lungs, was only slightly elevated.

Aspirated reflux has been demonstrated as the cause of chronic cough which can lead to pneumonia and bronchiectasis. And, if my observations are consistent, with many other undesirable symptoms.

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: Pyrrhonist
Date Posted: 04 May 2014 at 11:51am
> Aspirated reflux has been demonstrated as the cause of
> chronic cough which can lead to pneumonia and bronchiectasis.

I have mild bronchiectasis - but I have had productive lungs since an infection which started when I poked my eye with a twig. That started a cold which travelled down to my lungs and caused the chronic cough. That was 30 odd years ago - despite many tests at that time the cause of it was never found. So in my case I don't think it had anything to do with reflux - but there is no way to be certain of such past events.

I have however experienced reflux getting into my larynx and pharynx. That is most unpleasant. I still get that occasionally. I suspect that the real problem there now is die to pepsin, which (if it is indeed that) doesn't have much taste (unlike bile) but causes the same dry, burning sensation as bile, though it doesn't persist for as long.

There are all manner of sensations that can be caused by refluxate in the wrong place and it is extremely difficult to know exactly what is happening. Like yourself, I am using guess work combined with logic an what little evidence I can uncover. There is very little that ant doctor seems to be able to do to help.

Hc blockers do (from reports read) seem to have fewer undesirable side effects. This could simply be because they are only partially effective. Or are there other mechanisms by which PPIs interfere? Mechanisms that is other than via the effects of preventing acid.


-------------
Richard Torrens. - See my www site for my own experiences with Barrett's and reflux etc.


Posted By: boothy
Date Posted: 05 May 2014 at 9:15pm
Hi Chris. I would be interested to know what your H2RA and Gaviscon regime was. Thanks, Steve


Posted By: chrisrob
Date Posted: 06 May 2014 at 9:07am
Hi Steve,

I did discuss this with our consultant gastroenterologist and our advanced nurse practitioner.

I asked to experiment. The normal recommendation with ranitidine is to take it at night to reduce nighttime acid production - and often for patients on PPIs during the day.
I had established my main problem was reflux rather than acid and I knew neither PPIs nor H2 blockers would help with that. I knew the tablets may block acid for upto 12 hours so I took 150mg on waking so they'd be effective an hour later when I had my breakfast and see me through lunch and another 150mg mid afternoon to see me through dinner in the evening.

I kept a bottle of Gaviscon to hand for when needed - which was mainly about half an hour after dinner and/or just before going to bed.

Ranitidine is not as effective as omeprazole and I did form time to time experience a twinge of heartburn (hence the gaviscon). If I had had to go on much longer, I know I would have had to revert to PPIs.

My GP was not happy, She is still of the belief PPIs stop cough (even though I can demonstrate differently) and felt a bit miffed that I had by-passed her in talking to the consultants about it.

Following the op, I'm on lansoprazole "for a few weeks" as a precautionary measure. I know I will upset my GP again by not requesting a prescription renewal.

All the best

Chris

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: bobdigi
Date Posted: 10 May 2014 at 3:00pm
Thanks for your post. I was weary of asking for a fundo as I understand if you have a Fundo, you can't have LINX in the future.
Do you know if this is true. Because if LINX is found to be the better option, I don't know if I want to jepordise the chance of me having it.


Posted By: chrisrob
Date Posted: 10 May 2014 at 4:52pm
If you have a fundo and it comes undone, it can be repaired but it's a more difficult operation untangling the remains of the original wrap and removing scar tissue and possible adhesions. They usually then stretch the oesophagus a bit or pull out a bit more of the stomach to provide sufficient length around which to wrap the fundus.

https://sites.google.com/site/barrettswessex/JOURNEY/journey19 - This link describes the fundoplication operartion.

To make a more permanent job, in addition to stitching the fundus to itself, it may also be stitched to the oesophagus. This stretching and double stitching is a Collis-Nissen fundoplication which I had this time. But you have to trust the surgeon who has to decide what's best when he gets inside to have a look.

I am pleased we have the best surgeons in UK for this procedure in Southampton.

Fitting a LINX bracelet assumes the oesophagus is a smooth tube externally - which it won;t be after a previous fundoplication which is why LINX cannot be used then.
Although LINX may be the best mechanical device presently, its longevitity is still in question. It has been tested for over 10 years and had positive outcomes. However there have been spectacular failures in the past (google Angelchik).
All the specialists I have spoken with say in their view, fudnolication is the superior treatment as the elasticity of the wrap is the same as that of the oesophagus beneath. You cannot control the strength of the magnetic beads of LINX and precision in sizing (crudely adjusted by adding or removing beads) has to be 100% accurate.

Another procedure getting considerable media exposure is Stretta where a number of vertcal burns are made by radio frequency to produce scarring to the inside of the oesophagus to create a constriction. However this is not as flexible as the original oesophagus and in time the scars will heal.

Then there's TIF = Transoral Incisionless Fundoplication - actually a misnomer as it's really a gastroplication folding the gastric cardia back on itself and stitching without actually reaching the fundus. This has not so far proved as satisfactory as a Nissen fundoplication but an Indian company has produced an advanced version of this technique which it hopes will be more successful.

http://www.aetna.com/cpb/medical/data/200_299/0213.html - Although a few years old but recently reviewed, this link takes you to a paper comparing artificial anti-reflux devices.

http://www.medscape.org/viewarticle/457765_4 - And this page from a presentation at a symposium 10 years ago is also worth a read.

To my mind, the beauty of LINX is if it fails, it can be replaced or fundoplication may be possible afterwards. But the manufacturers themselves are cautious about the possibility of the bracelet's migration and admit even the studies with the best outcomes do not equal those of fundoplication.

If you are considering either, discuss them both in detail with a good surgeon.

Meanwhile, although I had the fundo purely to reduce reflux and knowing it didn't cure Barrett's, it was quite heartening to read http://www.ncbi.nlm.nih.gov/pubmed/24806626 - this report published yesterday : "Anti Reflux Surgery might decrease but not eliminate the risk of progression to dysplasia or cancer in Barrett's patients."

Cheers,
Chris

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: chrisrob
Date Posted: 24 May 2014 at 11:27am
I'm supposed to have a follow up clinic appointment 6 weeks after surgery. I've just received notification of that appointment: 3rd September!

Just as well everything's progressing OK.
Walking a mile a day and will recommence cycling next week.

Eating reasonably - but small portions and making sure everything is cut up and chewed well and swallowing carefully. Sometimes, an hour after eating, I feel very nauseous for about an hour. It's probably because I cannot let out a large burp - small ones are OK. I'm keeping a food diary to find the main culprits.

The wounds are almost invisible already.

I never did get the follow up after my original fundo as I was back in hospital having my gall bladder removed at the time.
It almost seems now this follow up appointment is unnecessary.

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: chrisrob
Date Posted: 24 May 2014 at 1:57pm
It was great to meet Jeff at last, yesterday. And as an experiment, I let him treat me to a Chicken McSandwich which I coped with OK!

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: MrJealousy
Date Posted: 25 May 2014 at 9:04am
Hi chris, After my fundo, I found that Deflatine worked well after meals.



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