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mumof2gem
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Quote mumof2gem Replybullet Calendar Event: Hi, I'm new and very worried
    Posted: 12 Apr 2017 at 10:16pm
Hi everyone,
My Name is Gemma and I have just been diagnosed with barret's. I am 34 years old.
Hoping for some support and words of wisdom as all I can think about is the 'C' word and not being around for my kids.I am not coping well with this at all.

The diagnosis has come as a shock as I thought I had an ulcer after taking too many ibruprofen for fractured ribs.

I had my endoscopy and there was still no mention of barrett's at that point. the report said-
Esophagus-Esophagitis/reflux
Stomach- Gastritis/bile relux
duodenum-normal
Inflammatory nodules at GOJ, biopsies taken.

When doc opened biopsy results they said no cancer or pre cancer but 'barretts type mucosa could not be ruled out.'
Doc thought that a bit vague so wrote back to endoscopist to check if I had a typical barrett's appearance. She then wrote back saying yes.

Does anyone else think that a bit weird? why did she not mention barrett's right after the scope or write that she suspected it on my report?

My symptoms began with pain swallowing but then progressed to a constant hoarseness and intermittent sore throat. No heartburn whatsoever.

No luck with 40mg omeprazole so now on a huge dose of 80mg Esomeprazole and 300mg Ranitidine but still no symptom relief.

Hope to be referred to specialist soon but GP dragging feet, using me as a guinea pig for different meds.
Feeling truly miserable at the mo but glad I found this site with others going through the same.

Sorry so long winded, thanks for reading x


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steveb8189
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Quote steveb8189 Replybullet Posted: 13 Apr 2017 at 8:25am
Good morning!

Firstly, that sounds like an incredibly big dose of drugs. Are you really still getting heartburn? Do you notice it more after eating or at night? Could the pain you feel still be related to your rib injury? I pull muscles in my back and it feels exactly like heartburn until I lie on a foam roller and it just disappears.

As for your diagnosis - do not worry. Those results are by no means clear so you may not even have Barrett's. On a first endoscopy where there is inflammation there is little chance a biopsy will be conclusive. You need to get this heartburn under control for a month then get back for another scope. If your GP isn't doing what you want, go and see another one.

Until you have a clear diagnosis and know exactly what is going on down there keep the C word out of your head. It won't help your situation in any way by worrying about it.
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mumof2gem
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Quote mumof2gem Replybullet Posted: 13 Apr 2017 at 9:15am
Hi Steve,
Thanks for the reply.
Yes, huge dose of drugs! I have never had heartburn!
My symptoms are mainly throat clearing, mucus and hoarse voice. Ribs fully healed now so can't be that.
My results do seem unclear but GP not over helpful (cost cutting I expect)! I may well see another GP or pay for a second scope myself as I am going out of my mind.
Thanks again.
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steveb8189
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Quote steveb8189 Replybullet Posted: 13 Apr 2017 at 11:40am
Unfortunately the PPIs will do little to help with your reflux symptoms. Personally, I would reduce the dose to the 40mg for a month and then down to the 20mg maintenance dose if you are not getting any heartburn.

If you can get another scope after a month to check on things that would be helpful. You may not be feeling the hearburn but since you have some esophagitis there is certainly some acid damage down there. Chris just posted the symptom checker on another thread to understand reflux vs acid.

Personally I would stick with the NHS rather than paying to go private - but just keep on top of them and perhaps ask to see a different GP at your surgery. All you want is a referral to a specialist and they should take it from there. Which part of the country are you in?

Steve
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jcombs99
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Quote jcombs99 Replybullet Posted: 13 Apr 2017 at 4:23pm
M
        Stay off of painkillers aspirin ect and STAY on that high dose . PPI's lower the acid in ur reflux that's all but diet ect can help with the reflux but never stop it . Get another EGD from the NHS in like 60 days from last one . They should be able to SEE better by being less inflamed ..NHS is SLOW but u can go broke with private so play their game and I would get another opinion on the slides ether by NHS or private .THEY COUNT looking only means it MAYBE barretts or look like barretts.

Shop around for good price from good path department.
CHEERs
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mumof2gem
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Quote mumof2gem Replybullet Posted: 14 Apr 2017 at 11:00pm
Hi Steve,Yes, I am keen to reduce PPIs but I will take the rest of the course as my GP said that if I'm still having symptoms after this very strong dosage then he has grounds to send me to a gastro man.
No improvement yet but 2 weeks to go. If I still don't get referred I will see someone else.
I am in sunny Worcestershire!
Thanks for the advice.

Edited by mumof2gem - 14 Apr 2017 at 11:01pm
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mumof2gem
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Quote mumof2gem Replybullet Posted: 14 Apr 2017 at 11:07pm
Hi Jeff,
That's a good idea to get another opinion on my slides privately, and in the meantime keep pestering the NHS for another scope.
Thanks for the advice
Gemma
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chrisrob
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Quote chrisrob Replybullet Posted: 15 Apr 2017 at 12:14pm
Hi Gemma,

Sorry I haven't responded to this sooner.
Unfortunately things can take a time.
Your Barrett's may have been suspected at endoscopy but it's not until biopsy results that it can be identified.

Your symptoms are typical of reflux. Your Barrett's was formed by a combination of reflux + acid + bile as detailed here.
The easiest of those elements to control is the acid. Unfortunately, although acid suppressant medication is excellent at controlling acid (a chemical process) it is not so effective at controlling the reflux (a mechanical process). All the doctor can do is increase your acid suppressants in the hope it will help.
Even top gastroenterologists often fall into the trap of thinking of "Acid Reflux" being one condition and the standard treatment is PPi medication. (I had to point that out to the most prominent Cambridge based, internationally recognised, oesophageal professor recently as she made the common mistake of suggesting surgery was only an option if PPIs don't work.)

You must have been refluxing acid, even though you didn't feel the heartburn, to have caused the Barrett's, so PPI therapy is appropriate - though not necessarily at the level you're on. 40% of acid refluxers don't experience heartburn, more commonly women. This is believed to be due to an action of oestrogen in suppressing the pain signals. This would make sense since women are prone to reflux during pregnancy. It may also be oestrogen plays a small part in protecting against development of oesophageal conditions which is why there's a greater proportion of males who develo Barrett's and adenocarcinoma.

It also appears your doctor may have been misled by Astra-Zeneca's claims about Esomeprazole. They try to claim 80mg esomeprazole is equivalent to 40mg omeprazole whereas, in reality it is actually a weight for weight equivalence (see this table). (It could be your GP believes their claim esomeprazole is better and that the 80mg he's prescribed is equivalent to the 40 omep you were on?)

I was on 80mg omeprazole for a few years ineffectively whilst my reflux symptoms increased.
Controlling reflux has to be done by lifestyle as described here.
If that doesn't work, surgery may be required.

My years of 80mg omep induced hypochlorhydria rendering me anaemic and unable to walk 50 yards without tiring.
I asked for, and received, a fundoplication which gave me my life back (and also means I no longer require medication).

If interested my account of that operation may be found here and you may read others' accounts of those who have had the procedure on the Barrett's Wessex website here.

If you decide fundoplication may be the way forward, you'll need to ask your gastroenterologist. See your GP and ask for a referral.
Your doctor may be trying to sort you himself (as their job seems to be to try and save the NHS money) but the operation is available on NHS. It may take a while (typically 9 months) as it's classed as Elective surgery which puts it under Emergency and Essential as far as priorities go.

Unfortunately there isn't a patient support group for Barrett's patients in Worcester. There is the Gutsy Group but they concentrate on "people diagnosed with or recovering from oesophageal and gastric cancers" but they may be helpful.

All the best
Chris
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mumof2gem
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Quote mumof2gem Replybullet Posted: 16 Apr 2017 at 7:54pm
Hi Chris,
Very informative.
Thank you for taking the time to reply.
Kind regards
Gemma.
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steelee
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Quote steelee Replybullet Posted: 04 May 2017 at 10:02pm
Hi Gemma,

I live in Warwickshire but fairly near to Worcester, I would ask to be referred to the QE in Birmingham as they are treating me and are really good, don't let the GP tell you they can't because they can!.
Ed
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