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20/20 Hindsight

Printed From: Barrett's Support Forum
Category: Barrett's Support Forum
Forum Name: Support Forum
Forum Discription: News and Events
URL: http://www.barrettscampaign.org.uk/forum//forum_posts.asp?TID=1859
Printed Date: 20 Nov 2019 at 6:34pm


Topic: 20/20 Hindsight
Posted By: GrahamB
Subject: 20/20 Hindsight
Date Posted: 18 Oct 2017 at 2:54pm
Having read the stories of others on here and Chris' excellent resources it has struck me just how many symptoms / effects of Barrett's I have ignored for so many years.

As I have had a HH since birth (50 years ago - the story of how they "treated" HH back then is a whole different story!) I have also probably had some form of BE for most of that time. Over the years I have managed to ignore:

Heartburn - mild
Heartburn - severe
Heartburn - almost debilitating
Dysphagia - mild
Dysphagia - moderate
Dysphagia - requiring A&E attendance
Recurring morning cough
Recurring morning nasal congestion
Bad breath
Unexplained tooth decay
Continual sour taste in mouth

Probably about five more that don't spring to mind!

I have been soo lucky to have been diagnosed when I was. If my father-in-law hadn't been diagniosed with OAC last year I might still be ignoring things until it was too late (as, sadly, it was for him earlier this year). Instead I am being treated for extensive LGD and will probably be going down the fundo route once the RFA treatment ends. I may come out of this whole thing "Barrett's free" without any ongoing symptoms. I will be monitored for the forseeable future. All this because I eventually (with a huge push from my wife and mother) stopped doing the "man thing" and ignoring my symptoms.

All this says to me that we, that know what this disease is and what it can mean, educate those we know and make sure that they don't ignore the signs until it is too late.

Graham



Replies:
Posted By: chrisrob
Date Posted: 18 Oct 2017 at 3:46pm
Thanks Graham,

That's exactly why I started the support charity http://www.barrettswessex.org.uk - Barrett's Wessex in 2009.
I had buried my head in the sand, too, and had it not been for a kidney stone (from too many Rennie) that sent me to the doctor, I wonder whether I would by now be using OTC Nexium or have succumbed to the cancer.
And I hadn't realised my dry eyes, ear problems, poor sense of smell, etc were due to reflux either before my fundo.

We are now trying to start support groups elsewhere. (See http://www.barretts.org.uk - Barrett's UK directory.) But we do seem to be "South heavy" presently.

Need to find helpers willing to get groups established in the midlands the and north.

"Our principal aim is to reduce the number of deaths to oesophageal cancer through raising awareness of its potentially pre-cancerous lesion, Barrett's Oesophagus in Southampton, Wessex and beyond."

Interested in Dr Namir Katkhouda's comments http://www.cleveland.com/healthfit/index.ssf/2010/07/medicine_versus_surgery_for_ge.html - in this article .
He believes that anyone who develops the precancerous condition known as Barrett's esophagus should have anti-reflux surgery.
"If I have Barrett's, I'll get surgery."

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


Posted By: GrahamB
Date Posted: 18 Oct 2017 at 4:08pm
I can tick the poor sense of smell off my list!

On the medication vs surgery topic. I have been on 40mg Oemeprazole for over a year now and I do worry a little about the long term implications. Just doesn't seem right to be adding chemicals to my system for (potentially) the rest of my life.

While waiting to go through for my most recent RFA session I had a long chat with my consultant about what happens after RFA. Her thoughts are to go down the pH Mamometry / Nissen route as it would seem silly to go through the RFA just for Barrett's to reappear since, as a result of my 4cm HH, my LES can't hold back the reflux.

While the idea of any surgery is just as disquieting as long term medication it seems the most sensible long term path. Since I still have three or four more RFA sessions to go (I started with C8M8, now down to C4M6) it probably won't be a decision that needs to be made for another year or so.



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