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NickH
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Quote NickH Replybullet Topic: regular reflux
    Posted: 27 Nov 2017 at 8:44am
Hi all,

Just wanted to get a general opinion on recent developments for me. Diagnosed with BO in 2014 (IM also), have been on omeprazole for about 10 years. I've always had lots of burping otherwise I'm not aware of any other obvious symptoms. Over past few months I feel that reflux symptoms have increased, mainly the feeling of something in the throat. No issues with swallowing. I went to GP to ask for a referral to consultant to discuss, consultant secretary came back saying I needed to go to ENT??

Chased GP again who then suggested I speak to my local Endoscopy unit to get looked at, I duly did this and now have an appointment for next month (last endoscopy was a year ago with all looking ok).

Just wanted to get opinions on whether this is the right course to take, from what I've read on the forum is that certain pH tests should be carried out to see what my acid levels are, if so am i wasting my time and the resources of the NHS by having another endoscopy?

I personally feel that I'm now always on the look out for symptoms, ever since my diagnosis I sometimes wonder if I almost 'imagine' sensations etc just because I know about having BO. I'm pretty sure there is a degree of making more of certain symptoms but also aware that I don't want to be a 'head in the sand' type, dismissing symptoms as nothing to make a meal of.

Following my last endoscopy the consultant upped my PPI from 20mg once a day to twice a day after I mentioned burping from time to time, seems a bit high to me and not sure that this is the right method to tackle reflux?

Also just wanted to mention how great this forum is, I often log on to read other people's experiences and advice given, is reasuring to know there are many others out there feeling the same way I do! I'm located in west yorkshire so am unfortunately a long way from any support groups otherwise I'd attend meetings and events.

Thanks in advance
Nick
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steveb8189
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Quote steveb8189 Replybullet Posted: 27 Nov 2017 at 9:37am
Hi Nick

I would probably take the endoscopy if it was offered as it's always good to keep an eye on what's going on down there. That said, I wouldn't expect to see any changes so soon after your previous one.

The 24hr pH monitoring would give you some evidence of how often you are refluxing. You would need to stop the PPIs for a week beforehand as they monitor acid rather than just reflux. The problem will be that you have no baseline from before your symptoms started - so you won't be able to assess whether it is any worse.

I am in exactly the same boat as you with regards to thinking I'm "imagining" my symptoms. I am certainly far more aware of reflux after my diagnosis and feel like I'm refluxing all the time. The pH testing went some way to alleviate that as it showed exactly the number of reflux events in the day. I quite often feel like I have a lump in my throat (which can certainly be a symptom of reflux) but I may have had that forever and never paid attention to it before...

As for increasing dose for the PPI I would just take your doctors recommendation and see if the symptoms change. 20mg is the normal low maintenance dose of omeprazole so you should try to get back down to that level again in the future after your next consultation.

Steve
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chrisrob
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Quote chrisrob Replybullet Posted: 27 Nov 2017 at 10:02am
Hi Nick,

Lump in the throat feeling (globus) is reported by 50 % of refluxers. Refluxate travelling full column can breach the upper sphincter and aspirate into the lungs. In an attempt to prevent that, the cricopharyngeus tightens - that's what you feel.

A repeat endoscopy should put your mind at rest but it is unlikely to show anything has changed.

pH tests will show your acid levels but is it worth it? If you're still refluxing too much acid, the evidence will be there with the oesophagitis.

I'm assuming you're on omeprazole from the dosage you mention. 20mg is the normal maintenance dose but many require 40mg to keep their symptoms in check. I was on 80mg, ineffectively, for years prior to my fundoplication. Problem is, which so few doctors realise, is PPIs reduce acid not reflux but it's the only weapon in their armoury. You need to reduce reflux through lifestyle changes if possible and
surgery if not.

Regarding support groups. It would be great to have a support group in Yorkshire but requires volunteers to run it.
We are gradually expanding the Barrett's patient support network and inaugurated Barrett's Wales on Wednesday.
Barrett's Wessex continues to discuss with other charities working to raise awareness of oesophageal concerns, if they may wish to help. (It will be mentioned at the next meeting of Action Against Heartburn this week.
Presently we are starting (or boosting) one area a month for the next 6 months.
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NickH
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Quote NickH Replybullet Posted: 27 Nov 2017 at 5:50pm
Thanks for the replies. I'll keep the appointment then, as you say it doesn't hurt to keep an eye on what's going on.

I've been told to up my omeprazole from 20mg to 40mg, one in the morning and one at night, trouble is I regularly forget to take the evening tablet, have been taking a morning tablet for 10 years plus now and just do it without thinking, obviously need to train myself with the evening tablet too. I did tell 2 GP's that upping my PPI wouldn't help my reflux but they both felt that if the acid is reduced then the reflux would also reduce too, I think like you say Chris, I get the impression that the GPs don't really know what to do for me. It was me speaking to the endoscopy unit that prompted an appointment, the doctors just sent me away with a 'take more tablets' solution.

Something interesting I noticed today with regards to experiencing reflux symptoms. I usually work outdoors alone with virtually no one else to talk to and am often focused on the lump in the throat sensations. Today I was working alongside someone else and was chatting most of the time and didn't notice any reflux symptoms. Makes me think there is a degree of pyschosomatic diagnosis going on.

I work for myself and do have periods of free time where I would theoretically be able to help sort out a yorkshire/northern group. Have no idea how I'd go about doing it though, any advice on how to maybe get the ball rolling?
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pylorius
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Quote pylorius Replybullet Posted: 27 Dec 2017 at 6:39pm
Hi Nick

I live across the border in Lancashire and have just been diagnosed with Hiatus Hernia & Barretts. I am new to this forum only joining today but would be happy to help with a 'northern' group. My knowledge in this sphere is currently very limited but nonetheless willing to try and support/set up a group.

Regards
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chrisrob
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Quote chrisrob Replybullet Posted: 27 Dec 2017 at 7:12pm
It would be great to have a Barrett's support group in Yorkshire and/or Lancashire.

The Barrett's Support Network is growing slowly. See the Barrett's UK site here: www.Barretts.org.uk.

Whereas we are gradually spreading to cover the south of the country, so far we do not have anything in the North.

At the present time, we have these branches of Barrett's Wessex:
Bath (Barrett's Bath)
Bournemouth (Barrett's Bournemouth)
Salisbury (Barrett's Salisbury)
and these affiliated groups:
Essex (Barrett's Essex)
Wales (Barrett's Wales)
with these groups planned:
West country (Barrett's West) coming, hopefully, in March
Kent & SE London (Barrett's Kent) coming, hopefully, in April
Sussex and Surrey (Barrett's South) coming, hopefully, in May.
There are also support groups managed by a different charity in
London (HCUK London)
East Anglia (HCUK East Anglia)
We also hope to establish branches of Barrett' Wessex in
Dorchester and Reading later in 2018.

The map on this page of the Barrett's UK site shows the areas we would like to see support groups established (though boundaries are only suggestions).

If you think you'd like to start a support group in your area, we can help. Usually we can introduce you to supportive gastroenterologists, we can provide printed material and help with publicity.
See this page on Barrett's Wessex website for more information or contact me by email at: chairman@BarrettsWessex.org.uk.

All the best
Chris

Edited by chrisrob - 27 Dec 2017 at 7:21pm
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pylorius
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Quote pylorius Replybullet Posted: 27 Dec 2017 at 8:31pm
Hi Chris

How would we go about setting up a support group?

Regards
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chrisrob
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Quote chrisrob Replybullet Posted: 29 Dec 2017 at 7:14pm
Sorry for delay in responding, Pylorius.

There are different ways of starting support groups.
Depending upon how much work you are prepared to do, it is possible to start a group just by yourself. That's how Barrett's Essex got started when Carol Ledger decided it would be good to have a support group in her area. A couple of years further on, that group now has 35 members with two (Carol and Sue) co-ordinators.
She started by advertising a couple of
drop-in events.

It is better if you can get the support of your local hospital's gastroenterology team.
If you email me with your hospital name, we may be able to seek the support of the consultants or help arrange a meeting for you.

To get a large group initiated, it helps to have two or three willing volunteers and the support of the hospital consultants. This is the approach Barrett's Wessex used in establishing Barrett's Wales a couple of months ago. It does take a bit of planning.
We arrange for a venue and speakers. This is best done by the consultant gastroenterologist who may be able to book the hospital's lecture theatre and provide a talk. He may also be able to get another specialist or specialist nurse etc to provide a talk. Barrett's Wessex can also provide a talk and refreshments. (We are also often able to get support from Medtronic.)
The hospital may have a list of patients they can send invitations to. We agree a letter with the consultant, print sufficient and insert them in stamped envelopes which we send to the hospital. There someone, usually a nurse, affixes address labels and posts them out. (Obviously patient confidentiality has to be maintained: we do not have access to patients' details.)

There used to be a support group in West Yorkshire that was managed by Barrett's Oesophagus Campaign (BOC) - who originally set up this discussion forum. In 2010, a new charity, now called Heartburn Cancer UK, started and "acquired" patient support groups from BOC. Unfortunately they did not provide the support the groups needed and they folded. But there is a real need for support groups across the North and Midlands.

Let me know if you are still willing to consider the possibility of setting up a group in your area and we'll do all we can to help.

Cheers
Chris
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NickH
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Quote NickH Replybullet Posted: 30 Dec 2017 at 4:58pm
Hi Chris and Pylorius

Sorry for the delay in contributing, xmas has been manic but starting to settle down now

I'd certainly be interested in helping to set up a support group for the north. I wouldn't have the time to do it alone what with having my own business and young family but if Pylorius or anyone else is willing to help out it seems like a good idea.
Perhaps it would be better to move forward either via emails or a dedicated thread?

Thanks for the useful advice Chris!

Nick
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Sandra W
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Quote Sandra W Replybullet Posted: 31 Dec 2017 at 1:09pm
Hi Nick,

Just seen your post. I was originally sent to ENT but was then referred to gastro because the ENT consultant explained that my symptoms were being caused by reflux rather than throat issues.

I've been on Omeprazole since 2oo8. Mine is a long story and I won't bore you with it here, but basically I finally had my first OGD in 2008 after being admitted to hospital via A&E. I was told I had a hiatus hernia, given Omeprazole to take at 20mg a day, and then asked to attend the clinic for follow-up.

VERY long story short, I was misdiagnosed and discharged TWICE until my GP referred to to a top London hospital in 2011. It was then found that I had oesophageal squamous cell dysplasia requiring a 12 cm HALO ablation which was done in March 2012.

After the treatment, my consultant told me to increase the Omeprazole to 20 mg TWICE a day (morning and night) as this is the most effective way to control acid and works better than taking the full daily amount in just one dose.

I had my most recent follow-up OGD in September this year. Although there were 4 unstained lesions, the lab report has confirmed that there is no dysplasia present (at least not yet, LOL!. It seems that I still have chronic inflammation, so my next OGD will be done in 2 years' time. To be honest, the Omeprazole doesn't seem to be working well for me any more, so I think maybe I need to get my GP to change the PPI and / or write to the consultant. I'm especially concerned that I have been feeling sick non-stop for many months now, so I think maybe some more investigations might be needed as regards that.

As regards your own tests and follow-ups, I would definitely accept any tests that you are offered. It's always better to be safe than sorry, so don't take risks by avoiding investigations that help to monitor your health issues. Don't ever feel that you are wasting their time. You have a condition that needs medical monitoring, so make sure you get it.

Good luck! All the best,

Sandra.

Edited by Sandra W - 31 Dec 2017 at 1:11pm
E-mail: swilliams888@hotmail.co.uk
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