Barrett's Oesophagus
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chrisrob
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Quote chrisrob Replybullet 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 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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DanJ
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Quote DanJ Replybullet 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
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jcombs99
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Quote jcombs99 Replybullet 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
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LoraB
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Quote LoraB Replybullet 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.
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chrisrob
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Quote chrisrob Replybullet 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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Sandra W
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Quote Sandra W Replybullet 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.
E-mail: swilliams888@hotmail.co.uk
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chrisrob
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Quote chrisrob Replybullet 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.

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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Sandra W
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Quote Sandra W Replybullet 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.
E-mail: swilliams888@hotmail.co.uk
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chrisrob
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Quote chrisrob Replybullet 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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Sandra W
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Quote Sandra W Replybullet 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.
E-mail: swilliams888@hotmail.co.uk
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