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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=1234
Printed Date: 18†Aug†2019 at 9:35pm


Topic: New
Posted By: peggy43
Subject: New
Date Posted: 18†Aug†2013 at 6:46pm
Hi I am new to the forum and am hoping for some information if anyone is able to help! I had an endoscopy about 3 weeks ago and was told I had Barretts oesophagus and 2 biopsies were taken. I went for what I was told was an urgent follow up appointment last week so was expecting bad news!
At the appointment the doctor told me the biopsies were fine and I don't have Barretts. So I was pleased to get that news after all the worry but I am also a bit concerned that the endoscopist was sure the change in the lining of my oesophagus was due to Barretts.
Is it possible to misdiagnose and if the biopsies are clear but it clearly looks like barretts, will it possibly turn in the future?
Thanks for reading my post
Peggy



Replies:
Posted By: jcombs99
Date Posted: 18†Aug†2013 at 7:52pm
My Doctor (GI) admits to being WRONG either way (Path report TELLS ALL) and that's why he is my doctor .So look into this a little and do what you want..

Good for You

HGD JEFF


Posted By: peggy43
Date Posted: 19†Aug†2013 at 8:15am
Thank you Jeff its a mystery to me all this.
Peggy


Posted By: chrisrob
Date Posted: 19†Aug†2013 at 8:57am
Hi Peggy,

Diagnosing Barrett's is not an easy task.

Firstly the endoscopist has to get the best site for biopsies. It's a bit like looking for a needle in a haystack.
They follow what's known as the "Seattle protocol" when taking biopsies: 4, quadrantically, for every centimetre length of the suspected section of the oesophagus.
And it's easy to confuse the salmon colouration of Barrett's with the cardia (top junction of stomach) often exposed through hiatus hernia.

Next the biopsies have to be examined by a histopathologist. The cell samples are dyed to show up abnormalities, set in wax and thinly sliced for microscopic examination.
The pathologist doesn't really know the exact origin of the sample - to rule out cardia cells for example.
Recording the position and size of the suspected area cannot be precise. The endoscopist has to estimate distances using the scale engraved on the outside of the scope - which is only graduated every 2 centimetres.

Earlier this year I was in a seminar with numerous pathologists (an other gastroenterology specialists) where we were shown cell samples and asked to determine whether they showed any metaplasia ("normal" Barrett's) or not and also whether any showed any gradation of dysplasia or even adenocarcinoma - and what our suggested treatment would have been.
It was very interesting to see the wide range of variation. (I was quite pleased I didn't do any worse than the majority of those present.)

To get an angle on the problem, http://pathology2.jhu.edu/beweb/study_images.cfm - this page shows cell samples and the interpretation placed on the by 12 top pathologists.

So it is always a possibility that Barrett's can be missed. The reassurance is that if there is any doubt, the samples are reviewed by another pathologist and if necessary, another scope may be requested and more biopsies taken.

For the vast majority of us with Barrett's, it will not progress. If it does, the initial stages are normally so slow that even if something was missed on a scope, it would still be picked up in time at the next scope.

It looks like yours is good news. The biopsies of the suspect area did not show metaplasia. If they did miss any it will probably be a small insignificant spot. If they have any slight concerns, they will call you back for another scope in a couple of years time. (May sound a long time but I've had my 2cm Barrett's for 20 years without change - and not expecting any.)

All the best

Chris

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


Posted By: DanJ
Date Posted: 19†Aug†2013 at 8:57am
can you post up your report you received afterwards , just for interests sake?
 
 


Posted By: DanJ
Date Posted: 19†Aug†2013 at 9:00am
very usefull post chris , thanks


Posted By: peggy43
Date Posted: 19†Aug†2013 at 6:57pm
Thank you Chris that was really helpful. My initial report read like this
Barrett's Oesophagus total length including circumferential and tongues of Barrett's mucosa 2cm and maximum length of circumferentially involved mucosa 1cm.
2 biopsies taken.

That's all I have I wasn't given the report from the pathologist. Ive tried to get a copy without success as yet!

Thanks
Peggy


Posted By: jcombs99
Date Posted: 19†Aug†2013 at 7:07pm
Get that Path report and save it .ASK for a redo in 20 months to be on the safe side .

Mr. Careful and Alive

HGD JEFF


Posted By: peggy43
Date Posted: 21†Aug†2013 at 10:27am
Thanks Jeff I will get it. They said repeat endoscopy in 12 months.
Peggy


Posted By: jcombs99
Date Posted: 21†Aug†2013 at 12:10pm
Great !!I like your doctor he's careful now do your part and it may all be normal looking in 12 months..

Sounds like a Happy Ending


Posted By: paulb
Date Posted: 21†Aug†2013 at 1:24pm
Indeed, before ablation, my Barretts went from 2cm down 0.5cm after 2 months of PPIs and healthy living. It may have ultimately completely receded even if I hadn't had the ablation.

I went with ablation because I could and because I would have residual concern about buried barretts. (Rational or not)


Posted By: jcombs99
Date Posted: 21†Aug†2013 at 1:52pm
Paul
Yours was the perfect textbook case .You Worried about it (right or wrong) so you had the ins. and funds to halo so you did like me.I would NEVER tell anyone to go into hock to Halo just barretts ..
When my barretts reappeared after 2 years my doctor stated he could have missed a speck and I stated " Don't think so Doc sure IT"S ME"..
But if buried barretts pops up OK but what if it pops DOWN which he stated can happen..You never see it change ..


Posted By: peggy43
Date Posted: 21†Aug†2013 at 4:48pm
Thanks again! I have been on PPIs for about 5 years and have tried every medication going. My reflux is complicated as its airway reflux and I have regular doses of aspiration pneumonia. The docs say my lungs are damaged and I have bronchiecstasis from constantly breathing in the gases from my stomach. My oesophagus has very poor function. They have offered me the fundo operation but say they do not know if it will work for my type of GORD. I keep telling them I want more info but all I seem to get is it might work or it might not! And it could make my swallowing worse!
Peggy


Posted By: jcombs99
Date Posted: 21†Aug†2013 at 4:58pm
Peg
Keep an eye on Chris's case which is a REfundo because of Reflux in his LUNGS.If you Fix your LOS and fix the HH to normal why wouldn't it work ?? They did offer it to you ..

No 100% on anything Lady deal with the Risk !!!

Just a carpenter with a bad fundo ..


Posted By: peggy43
Date Posted: 21†Aug†2013 at 5:13pm
Thanks yes I hear what you are saying its just I had a breast cancer operation and reconstruction 9 years ago and have chronic pain so am just a bit cautious of my body being altered again
peggy


Posted By: jcombs99
Date Posted: 21†Aug†2013 at 5:19pm
Small world Peg
My sister in-law had that too. She was one of the first ones at John Hopkins to do that . THEN years later she had a FUNDO(works)but my HH came back..

RISK !!!


Posted By: chrisrob
Date Posted: 21†Aug†2013 at 5:48pm
Hi Peggy,

Like you, my problem is one of aspiration and the cough is really debilitating: I almost pass out in my coughing fits where everything goes blank, I go dizzy and it takes a few minutes for me to "come round" with a weird sensation of everything pulling and pushing.

I had the fundo over 4 years ago and it worked well. My cough didn't go entirely (I imagine I have residual lung damage) but it was perfectly manageable.
My wrap appears to have come undone and I want it redone.

I am having a scope next Wednesday to assess it. I am hoping I'll be offered the new op at the end of November (as I'm away for the first 3 weeks and it would be good to have recovered in time for Christmas - or I may have to ask the excellent cook that is my sister-in-law to liquidise everything!)

I know I have a high pain threshold but I don't like the thought of pain. However, my first operation went smoothly and apart from feeling bruised felt fine. It only took a few weeks to get back onto solid food.

https://sites.google.com/site/robichris/barretts - (My account of my first fundo can be read at the bottom of the page this link will take you to.)

All the best

Chris

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


Posted By: peggy43
Date Posted: 22†Aug†2013 at 9:54pm
Hi Chris it sounds like we have very similar problems/symptoms. Good luck with your scope and I hope they offer you the fundo again, especially since it worked so well. Do you have problems with swallowing as well? That is what is putting me off the fundo as the consultant said it could make swallowing worse.
Thanks again
Peggy


Posted By: chrisrob
Date Posted: 23†Aug†2013 at 7:59am
Hi Peggy,
I had no problems with swallowing post fundo. Initially the constraint of the wrap makes the lower end of the oesophagus narrow. (This gets better as the scar tissue heals.) So you would need to be on liquids and soft foods for a few weeks.
Though some years ago (pre fundo) I used to have difficulty swallowing some things - mainly chicken breast and bread.

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


Posted By: jcombs99
Date Posted: 23†Aug†2013 at 4:32pm
There's a protein drink here called (old folks)ENSURE lived on it for 2 weeks tastes great and no big deal ..


Posted By: Yaya
Date Posted: 06†Jun†2019 at 1:21pm


Hi Jeff

Im the mother of a 19 years old daughter with 1 cm of barrett and wouldlike to find a surgeon in USA to eradicate it! By any chance do you know a surgeon in USA? Thank you so much for your help!

Yaya


Posted By: chrisrob
Date Posted: 08†Jun†2019 at 4:18pm
Hi Yaya,

I can't tell you anything about surgeons in US. However, I am concerned about your view of eradicating Barrett's.

Barrett's is the addition of acid protective cells to the lower oesophagus. Think of it as armour plating, if you like, or consider it as a friend https://sites.google.com/site/barrettswessex/tips/barry - as in this story.

There is a very small risk it may mutate to cancer (about 1 in 1000 each year in US but the risk actually decreases the longer you've had it). That's why those with Barrett's are recommended to take PPI medication daily, as it reduces that risk, and to have regular surveillance scopes every few years.

Your daughter is young and, being female, not the usual demographic but it's quite possible to live a normal life with this condition and not having to think of it. I know I've had my own Barrett's at least 25 years and probably much longer and will probably still have it when I die - of something unrelated.

If she experiences reflux symptoms, she may need to adopt some lifestyle modification https://sites.google.com/site/downwithacid2/home/reflux/reflux-remedies - as described here.
Apart from that, food and drink should not cause any problems - though if she has some oesophagitis, it may be irritated by certain foods which she can avoid whilst it heals.

P.S. 1cm Barrett's is really very small. Some doctors won't classify anything less than 1 cm.

If she were to have the Barrett's ablated, there is a high possibility of it reforming. She would still need to remain on PPI medication and have regular surveillance.


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


Posted By: Yaya
Date Posted: 08†Jun†2019 at 5:04pm
Hi Chris,

Thank you so much for your answer!
I ve forgotten to tell you that my daughter has a small hernia hiatal around 3 cm ! Im wandering what do you think about the surgery ( fundo, stretta, linx, tif, ...) because she doesnít want to take PPI ( 20 mg per day omeprazol and gaviscon )all her life with the side effects and because she is so young!
Thanks again and have a great weekend
Best Regards

Yaya


Posted By: chrisrob
Date Posted: 09†Jun†2019 at 10:08am
Most, if not all, of us with Barrett's have a hiatus hernia, it is the usual reason the lower oesophageal sphincter doesn't work properly and permitted the reflux of acid and bile that contributed to the development of the Barrett's cells, https://sites.google.com/site/downwithacid2/home/complications/barrett-s-oesophagus/put-simply - as described here.

There are various reflux reduction surgeries, https://sites.google.com/site/downwithacid2/home/reflux/reflux-reduction - described in this section of the Down With Acid encyclopaedia , she may have but why would you or she wish to go through that unnecessarily?

All surgery carries risks that may, in your daughter's case, outweigh any benefits.
Laparoscopic Nissen Fundoplication (LNF) is the gold standard of anti-reflux treatments. I, myself, have had this twice. For me it was the best thing I ever did but that was because my problems were reflux causing chronic cough (with coughing fits lasting 2 hours until I practically passed out).

Although heavily promoted, I, personally, would not recommend Linx. It would not permanently manage the hiatus hernia, make surveillance scoping more difficult and can erode the oesophagus.
Stretta is, at best, a temporary stop gap - if it works. I haven't yet met anyone for whom this was an effective treatment. Even the manufacturers, Mederi, confessed to me it is not a log term solution.
TIF and MUSE have failed to prove themselves over long term.

Anti-reflux surgery will not remove Barrett's. LNF has been shown to probably reduce any risk of progression towards cancer as much as PPIs. However, with your daughter the age she is, it would not be recommended as it is likely she would need it redone at some stage.

Although I have had fundo, like many others, I do continue to take PPIs - now just 20mg omeprazole instead of the 80mg I was taking for years before the operation.

True side effects of PPIs are fairly insignificant. Some people may experience headaches, diarrhoea or constipation on one or other of them; if so, they should be able to find an alternative one that works. ( https://sites.google.com/site/downwithacid2/home/acid/medication#TOC-Proton-Pump-Inhibitors-PPIs- - See this section. )
If taking very high dose for a long period, there is a possibility https://sites.google.com/site/downwithacid2/home/complications/hypochlorhydria - induced hypochlorhydria may result in malabsorption of some minerals. If that is the case, as determined by blood tests, supplementation may be prescribed.

But there is much scare-mongering about other possible effects. Most of these are due to misreporting and confusion by the popular press between the terms causality and correlation. Studies supposedly showing a possible link between PPI usage and serious health issues are retrospective correlations and in most cases, subsequent investigatory research have disproved and causal link. (eg People with kidney problems may be more likely to take PPIs. They did not cause the problems.)

Read this chapter in the Down With Acid encyclopaedia for the actual findings of research: https://sites.google.com/site/downwithacid2/home/acid/medication/ppi-dangers - Controversy over long term PPI medication .

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


Posted By: Yaya
Date Posted: 09†Jun†2019 at 12:44pm
Hi Chris,
Thank you so much for your answer ! I appreciate your help!
Sorry but l have a another question. My daughter complains often to have some pain on her left arm and chest and l donít know if it can be her heart , hernia hiatial or the vagus nerf. Do you have experience if this can of symptomes?
Thank you so much again and have a great sunday

Best Regards

Yaya


Posted By: chrisrob
Date Posted: 09†Jun†2019 at 1:53pm
Could be referred via vagus nerve but better to have it checked out by a doctor.

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


Posted By: Yaya
Date Posted: 09†Jun†2019 at 6:02pm
Hi Chris,
Thank you so much! I will see the doctor!
Also by any chance do you know if there is a barrett forum in USA?
Have a great sunday

Yaya


Posted By: chrisrob
Date Posted: 09†Jun†2019 at 10:17pm
This is probably the oldest forum specific to Barrett's Oesophagus in UK but with members from all over the world.
There jave been other attempts that have failed but Facebook seems to be taking over instead.

There is the Facebook group https://www.facebook.com/groups/barrettsesophagusawareness - @Barrett's Esophagus Awareness which has nearly 5000 members from all over the world, a majority of them from USA, which you may wish to join?
I can sign you up, or just apply.

All the best
Chris

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


Posted By: Yaya
Date Posted: 09†Jun†2019 at 10:34pm
Hi Chris
Thank you so much! Yes if you can sign me up it will be so kind. I love your forum but it is just to finf more people not to far.
Have a great night
Yaya



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