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Advice request

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=1934
Printed Date: 15 Oct 2019 at 1:36pm


Topic: Advice request
Posted By: FayK
Subject: Advice request
Date Posted: 24 Apr 2018 at 12:13pm
Hi, thanks for the add to the forum.
I have had barrets for almost 20 years. I am 40 years old, female, healthy, slim and a vegetarian.My last surveillance endoscopy was in 2014 and found 'no worrying .changes'.
Since this time my hospital has stopped routine surveillance following 'guidance' from the the Royal College of gastroenterolgy.
I take 40mg of PPI but am still mostly daily symptomatic. I get lots of break through mouth/tongue/throat ulcers which generally go hand in hand with my particular acid symptoms.
My question is that I've had the feeling of something being stuck in my throat for about 6/8 weeks. I'm aware of it when eating etc. Today I saw my gp who was unconcerned and said it wouldn't be related to my barrets. She said it was a likely virus, as the lymp node (on the side I can feel the structure on)is up and the back of my throat is red. I don't feel systemically unwell and have had this worsening feeling for 6 weeks+. She suggested I come back in a couple of months if its still there. I feel a bit fobbed off but am not sure I have the right to feel that way! Does anyone have any similar experiences? I don't want to make a nuisance of myself but my now retired gastro put the fear of God into me about this disorder!
Thanks



Replies:
Posted By: chrisrob
Date Posted: 24 Apr 2018 at 1:20pm
Hello Fay and welcome to the forum.

Sorry to hear your symptoms recur despite being on PPI. I'm assuming you are on omeprazole? 40mg is the normal higher dose. (Equivalent to 60mg lansoprazole or 80mg pantoprazole.)

PPIs are the best way for reducing acid but not so good at reducing reflux - they just make it less erosive.

As found in the surveys informing my paper, https://sites.google.com/site/robichris/barretts/prevalence-paper - Prevalence of Extra-Oesophageal Reflux symptoms amongst acid refluxers and perceived efficacy of regular medication and reflux reduction intervention , the "lump in the throat" feeling is reported by half of those with reflux. It is probably Globus which is caused by the cricopharyngeus muscle, that controls the upper oesophageal sphincter, spasming or tightening in a bid to reduce https://sites.google.com/site/downwithacid2/home/reflux/lpr - extra-oesophageal reflux whence any refluxate could aspirate into the respiratory system where it could cause other problems.

Regarding surveillance, the vast majority of scopes show nothing new and, in that respect, could be considered a waste of time and money - except, of course, for the patients' reassurance. If we knew which patients' Barrett's were likely to progress, we could target surveillance scopes better.

The current http://gut.bmj.com/content/63/1/7 - UK Guidelines on the Diagnosis and management of Barrett's Oesophagus shows this decision tree for surveillance (though it is mediated by taking into account other factors such as age, sex, body mass, patient's anxiety etc):



Barrett's is the formation of columnar cells in the lower oesophagus to protect against acid erosion. The cells are similar to those lining the stomach ("gastric" or "cardial metaplasia" - CM) or lining the intestines ("intestinal metapplasia"-IM). The difference is in IM, there are some "goblet cells" that may be found hidden amongst the columnar ones. The role of these cells s uncertain but risk of progression towards dysplasia and cancer seems to be greater when they are detected.

I would suggest you look at the https://sites.google.com/site/downwithacid2/home/reflux/reflux-remedies - lifestyle measures to reduce reflux .
If your "lump in the throat" feeling, however, causes swallowing difficulties, then insist on a quick referral. (There are many reasons for swallowing difficulties but there is just a slight chance it could be the development of a tumour.)

You may find the free encyclopaedia http://www.downwithacid.org.uk - Down With Acid useful. If you would like me to send you a printed copy, message or email me with a postal address.

We also now have the start of a UK Barrett's patient network, https://sites.google.com/site/barrettsoesophagusuk/home - Barrett's UK , if you wish to meet others within your area.

All the best
mailto:chairman@BarrettsWessex.org.uk - Chris Robinson


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


Posted By: FayK
Date Posted: 24 Apr 2018 at 2:20pm
Thanks for your comprehensive reply. I take Rabeprazole, as the others resulted in crippling headaches. I also take ranitidine as and when I need it. I'm very iron and feritin deficient despite supplements but my Gp doesnt see this as anything to do with PPI's. They say it's because I'm a vegetarian- despite a balanced thoughtful diet. I was interested to read that other symptoms are associated with reflux. I couldn't say what type of cell the barrets is, only that it's small (2.5cm) and lower segment. I suspect it is non-dysplaysia since I have been removed from the surveillance list.
I live in Devon and my hospital is in Plymouth, I would be interested in support groups. I see that you visited very recently!
I don't think the lump feeling in my throat is stopping me swallowing, presently it's just irritating.
I'll take a look at the down with acid book. Thanks.


Posted By: chrisrob
Date Posted: 24 Apr 2018 at 3:54pm
40mg Rabeprazole is equivalent to 40mg omeprazole, https://sites.google.com/site/downwithacid2/home/acid/medication#TOC-Proton-Pump-Inhibitors-PPIs- - as shown here .
Although high doses over a long period may result in https://sites.google.com/site/downwithacid2/home/complications/hypochlorhydria - induced hypochlorhydria which may mean insufficient absorption of iron, it is more common for vegetraians to be deficient in this essential mineral.
I was on 80mg omeprazole for a few years prior to a https://sites.google.com/site/downwithacid2/home/reflux/reflux-reduction/fundoplication - fundoplication and became anaemic due to it.

We did indeed launch http://www.BarrettsWest.org.uk - the West Country group just a few weeks ago with interesting talks from Dr Sean Cochrane and Sr Vanessa Pritchard. Unfortunately, not being able to advertise via the hospital's patient list and having to rely on an advert in the Plymouth Times, meant it was poorly attended. Still http://www.BarrettsWessex.org.uk - Barrett's Wessex charity started with just 3 of us meeting in a pub and now has over 400 members. And http://www.barrettsessex.org.uk - the Barrett's Essex group started with just one determined person and now has 50 members.

Until Barrett's West http://www.BarrettsWest.org.uk - Barrett's West has sufficient members to be self sustaining, membership is being managed by http://www.BarrettsWessex.org.uk - Barrett's Wessex
Again, email me if you are interested in joining the group (free) to be kept up to date with any developments.

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



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