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Ready to give up

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=1827
Printed Date: 13 Dec 2019 at 11:46am


Topic: Ready to give up
Posted By: itf56_2
Subject: Ready to give up
Date Posted: 09 Aug 2017 at 9:38pm
So I had my Nissen a little over 12 months ago (just a few weeks beyond a year) and had relief from my reflux / burning. I did have issues at Christmas, which resulted in me going back on PPI, but post a scope that showed the wrap intact, I was encouraged to come off them again, and have been OK from Feb-July.

I've had a bad cold for a week or so and the reflux has returned with a vengeance. I'm also slightly able to burp, which hadn't been possible until now. I can think of no cause as I haven't been retching, haven't lifted anything heavy, haven't done anything on the no-no list. I don't drink don't smoke, don't have carbonated beverages. Have done all I can do behave as I was told after the op. At the same time, food got stuck again last night - so there must be some barrier there. I just don't understand.

I feel like I've thrown all my energy, and money, at trying to solve this and now I'm back at square one. I have some Esomeprazole (a couple of months worth) so will start to take those in the hope of some relief, but I fear I face a re-do, more time off work and more pain at 37 and after only 12 months.

I can't really afford to pay for another private fundo as I have a child now, but the NHS have consistently let me down and I'm scared it'll be months if not longer before I even get to see anyone much less get any action.

I don't want to be dramatic because it sounds ridiculous but I find it hard to want to go on. I've put up with this for 20-odd years now and feel like I'll never be well. I have to be here for my daughter, and I'm the only person working as my wife is looking after the baby. I'm just despairing at this point.



Replies:
Posted By: steveb8189
Date Posted: 09 Aug 2017 at 9:46pm
My sympathy is with you but I'm not sure what to add.

Is it reflux or heartburn you are suffering from? Do you get any relief from gaviscon?

It's around 10% of people who have a fundo who need to continue on PPIs. Do you find the emsoprazole effective?

I guess it may be that the wrap has loostened a bit causing you the issues Don't give up on the NHS. Get to your GP and get an apointment booked. Waiting times are one thing but waiting to get on a waiting list is pointless.


Posted By: itf56_2
Date Posted: 09 Aug 2017 at 9:49pm
I used to mostly suffer from heartburn particularly overnight but this seems to be reflux.

Don't know on the esomeprazole as I've only taken the first one today in desperation and will continue to take them and see how I do.

Gaviscon hasn't helped, I've even picked up the Gaviscon advance from the pharmacy but no it just doesn't do anything.

I'm going to try and request a GP appointment tomorrow but my GP surgery has just changed hands and is unusually chaotic. My GP did manage to get me referred to the private hospital who did my Nissen for the scope at Christmas but he has gone in the reshuffle and I'm not sure they would be so helpful a second time especially as the scope in January showed the Nissen as intact.


Posted By: steveb8189
Date Posted: 09 Aug 2017 at 9:59pm
So no burning now? What symptoms are you experiencing?


Posted By: itf56_2
Date Posted: 09 Aug 2017 at 10:01pm
Originally posted by steveb8189

So no burning now? What symptoms are you experiencing?


Burning in my throat yes and the taste of acid at the back of my mouth - not burning in my oesophagus and not classic heartburn further down if that makes sense?


Posted By: steveb8189
Date Posted: 09 Aug 2017 at 10:07pm
Yes it does. Very similar symptoms to the ones I have while on PPIs. I'm surprised the gaviscon doesn't help though.

Perhaps the GP can request a 24hr pH monitoring to see I you are actually refluxing. It could always be something else - post nasal drip?


Posted By: itf56_2
Date Posted: 09 Aug 2017 at 10:08pm
Could post nasal drip seem acid-y in the absence of reflux?


Posted By: steveb8189
Date Posted: 10 Aug 2017 at 6:45am
It could certainly taste sour. Have you ever had allergy issues?



Posted By: chrisrob
Date Posted: 10 Aug 2017 at 7:48am
I had my redo on NHS but it can take a while as they are getting so short of staff. The procedure is also classified as "elective" surgery putting it below "emergency" and "essential" in terms of priority.

It took 10 months from request to completion with me.

https://sites.google.com/site/robichris/barretts/refundo - You can read my account here.


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


Posted By: itf56_2
Date Posted: 10 Aug 2017 at 8:21am
Originally posted by chrisrob

I had my redo on NHS but it can take a while as they are getting so short of staff. The procedure is also classified as "elective" surgery putting it below "emergency" and "essential" in terms of priority.

It took 10 months from request to completion with me.

https://sites.google.com/site/robichris/barretts/refundo - You can read my account here.


As you might recall I was told I couldn't have my initial fundoplication on the NHS as there was "no budget" by my GP who wouldn't even refer me to discuss the matter. I'm not expecting better this time.


Posted By: chrisrob
Date Posted: 10 Aug 2017 at 8:33am
But it's saving money in the short term and costing more in the longer term.

"From a National Health Service perspective, LNF may be cost-saving after 8 years compared with maintenance PPI therapy for the treatment of GORD." http://onlinelibrary.wiley.com/doi/10.1002/bjs.4933/full - Short-term cost effectiveness and long-term cost analysis comparing laparoscopic Nissen fundoplication with proton-pump inhibitor maintenance for gastro-oesophageal reflux disease

"on the basis of current evidence, laparoscopic fundoplication represents a cost effective means of treating GORD rather than lifelong medical management." https://link.springer.com/article/10.2165/00019053-200725100-00003 - A Comparison of the Cost Effectiveness of Pharmacotherapy or Surgery (Laparoscopic Fundoplication) in the Treatment of GORD

If a referral isn't forthcoming from your doctor, ask for a second opinion.

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


Posted By: itf56_2
Date Posted: 10 Aug 2017 at 3:06pm
Got a GP appointment for Sunday afternoon which presumably means it won't be my regular GP. Just a question of how interested they are.

Were you able to control your reflux with Omeprazole between Nissens or not?


Posted By: steveb8189
Date Posted: 10 Aug 2017 at 3:43pm
The PPIs only help with the acid not the reflux. Give you aren't experiencing heartburn you may notice no difference with taking the pills.


Posted By: chrisrob
Date Posted: 10 Aug 2017 at 3:47pm
You're lucky to get a GP appointment.

I booked one a week ago for the only available slot they had - in 7 weeks' time(!) - and it's with a GP I've never heard of instead of my preferred GP who knows me. So that means half the consultation time will be taken up with me advising him of my history. (That's the reality of lack of staff retention and the funding cuts. They've brought NHS to its knees and now they're sawing its legs off.) Just hope my increasing extreme fatigue and leaden limbs is nothing serious.

Hope your locum (or whatever) will be more helpful. I have found that can sometimes be the case.

My problems between fundos were more to do with reflux than acid (which I managed with 300mg ranitidine and Gaviscon as required). I practised all the advice I give others about managing reflux but the blackout coughing fits recurred along with other reflux symptoms.

As I demonstrated with this paper, https://www.academia.edu/33849157/Prevalence_of_Extra-Oesophageal_Reflux_symptoms_amongst_acid_refluxers_and_perceived_efficacy_of_regular_medication_and_reflux_reduction_intervention - Prevalence of Extra-Oesophageal Reflux symptoms amongst acid refluxers and perceived efficacy of regular medication and reflux reduction intervention :"In the management of symptoms of extra-oesophageal reflux, acid suppressant medication did not appear to be effective whereas reflux reduction surgery was."
Which was coincidentally echoed in a separate paper: https://www.wjgnet.com/1007-9327/full/v23/i19/3546.htm - Nissen fundoplication vs proton pump inhibitors for laryngopharyngeal reflux based on pH-monitoring and symptom-scale published at the same time: "LNF achieves better improvement than PPIs for LPR."

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


Posted By: itf56_2
Date Posted: 10 Aug 2017 at 4:01pm
It's because I live in the impoverished North. We're part of an extended hours pilot. You can normally get an appointment but it's pot luck who you see and if they care, there's no continuity at all and that always explaining history is something I know far too well.


Posted By: itf56_2
Date Posted: 10 Aug 2017 at 4:12pm
And chris obviously I hope yours is nothing of any note. Thanks again for providing this forum and the rest of your work.


Posted By: itf56_2
Date Posted: 13 Aug 2017 at 3:01pm
Saw the locum who inevitably upped my PPI dose and said to try that for a month then go to 20mg and see how it goes, and has asked that my GP surgery refers to me to get my Nissen looked at but apparently it's up to them whether they do the referral or not!


Posted By: bobdigi
Date Posted: 15 Aug 2017 at 9:12pm
How long did you need off work this year?


Posted By: itf56_2
Date Posted: 15 Aug 2017 at 9:55pm
Originally posted by bobdigi

How long did you need off work this year?


If you mean last year when I had my Nissen it was 3 weeks but I could reasonably have gone back after maybe 2-2.5


Posted By: bobdigi
Date Posted: 15 Aug 2017 at 10:08pm
I just meant in general. I'm a self employed window cleaner and a little worried about not working. I was hoping for uner 1 month.


Posted By: Alan64
Date Posted: 03 Sep 2017 at 4:56pm
Hi there very interesting post here, i have some similar symptoms too urself although i never had ur procedure done,may i ask u are u very stressed about this as just reading the posts u sound very stressed out about it all which is similar to myself


Posted By: itf56_2
Date Posted: 16 Sep 2017 at 3:12pm
Just to follow up, I managed to get a referral finally but only for December, then today got a letter asking me to re-book it as they'd found someone they particularly wanted me to see. Looking at his biography, he's the lead general surgeon for the trust and has a specialist interest in reflux - they've booked me in to see him in October, and I hope to be able to report some progress then.


Posted By: steveb8189
Date Posted: 18 Sep 2017 at 9:42am
Great news - especially as they've brought the date forward for you. Let us know how you get on.

In the mean time, how have your symptoms been?


Posted By: itf56_2
Date Posted: 18 Sep 2017 at 9:51am
Originally posted by steveb8189

Great news - especially as they've brought the date forward for you. Let us know how you get on.

In the mean time, how have your symptoms been?


Mixed. They're particularly bad today actually. I seem to have stopped being able to burp again (!) but I'm still getting reflux in the back of my throat and the problems I had before the surgery like shortness of breath and bringing up clear mucus (which cleared up after the Nissen) are back with a vengeance.

I'm surprised they've booked me straight in with a surgeon (but I know he also does endoscopy from his biography) and am hoping he will be able to help me make some progress, at least to find out if something has happened to the Nissen. But his bio lists his specialist interest as reflux which is helpful.


Posted By: itf56_2
Date Posted: 19 Oct 2017 at 4:33pm
Referred for a barium swallow and a scan (ultrasound I think) after finally seeing the surgeon today. Guess we go from there...


Posted By: chrisrob
Date Posted: 19 Oct 2017 at 4:52pm
Sorry to hear on-going problems post surgery.
It's possible the wrap is too tight which would explain the inability to burp and could mean foodstuff pooling above the wrap in the oesophagus giving th esymptoms you describe. Barium swallow should reveal that and, hopefully, a dilation will help.

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


Posted By: itf56_2
Date Posted: 19 Oct 2017 at 4:58pm
Originally posted by chrisrob

Sorry to hear on-going problems post surgery.
It's possible the wrap is too tight which would explain the inability to burp and could mean foodstuff pooling above the wrap in the oesophagus giving th esymptoms you describe. Barium swallow should reveal that and, hopefully, a dilation will help.


I had a full 360 and never had manometry, so I do wonder if this is the case, especially as I still can't burp and have difficulty swallowing and flatulence still.


Posted By: itf56_2
Date Posted: 20 Oct 2017 at 11:18am
Barium swallow on Tuesday which is alarmingly quick for the NHS. I had a "no sinister features and no dysplasia" biopsy in Jan/Feb so it surely can't have progressed to anything since then, right?


Posted By: itf56_2
Date Posted: 24 Oct 2017 at 5:11pm
Barium swallow showed liquid waiting at the wrap point which I guess is what I expected.


Posted By: itf56_2
Date Posted: 27 Nov 2017 at 10:34am
Just to give a slightly odd update - about three weeks ago my young daughter very kindly brought plague into the house and we ended up with a gastric bug. This led to me trying to be sick, which the nissen mostly prevented. It was painful and unpleasant but I was only sick a very small amount and had to wait for things to run their course.

However, since then I've had no sign of any reflux. I'm still having the swallowing difficulties (and due to see surgeon mid-Dec) but the reflux has gone and I'm back off the PPIs for three weeks now without incident.


Posted By: steveb8189
Date Posted: 27 Nov 2017 at 12:53pm
Every cloud and all that...

Sounds like quite a positive outcome to me. I guess the sickness could have physiologically changed your wrap. Shame it hasn't helped with the swallowing issues but hopefully they'll work it out when they have a look.

Keep positive!




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