At our last meeting a member of our support group informed us that for the last 3 months he has reduced his PPI dose from one Lansoprazole 30mg a day to one every other day. This has been working for him with Gaviscon at night if needed. I wondered if any other members who have had an oesophagectomy have successfully done the same .Your comments would be appreciated.
Phil
You have to do it under medical advice which I did - I only take gavascon the odd time now and have been off Lansoprazole for over 9 years at this stage.
Aoife
I stopped taking PPI's shortly after my op in 2012 and have relied on Gaviscon ever since then. In hospital I was given ranitidine but they didn't stop the reflux so when I returned home I started taking gaviscon instead. I've taken it ever since but I only need it at bedtime. Smaller meals and a slight change of diet means that I no longer have a problem with heartburn during the day and reflux only occurs at night when I'm in bed, one dose of Gaviscon before getting into bed takes care of that. I suspect ranitidine didn't work because my reflux was bile rather than acid but it doesn't matter which it is with Gaviscon. In six years there's been four ocassions when I've been woken up by reflux, one was after a meal out, and the other three were all around Christmas time. I keep Gaviscon by my bed 'just in case' but I've only needed a second dose when I've strayed 'too far' from my normal diet. Before my op', PPI's had started to cause pain in my joints and bones so I'm very relieved to be able to stop taking them.
Hi Magpuss may I message you about your diet as I’m very interested in what others eat to prevent reflux etc I would love to stop taking PPI’s too I had my surgery in 2012 too
Magz
Xx
I'm not sure that my diet is the main factor. There are few things that I ate before the op' that I can't eat now but certain foods I eat less of. One small potato instead of three medium ones - plus more green veg, one sandwich (one slice) instead of two or three but with more filling and maybe a few salad leaves. Fruit, eggs, yoghurt, seeded bread, always butter no low fat food, very little processed meats (bacon, pre packed ham etc) lots of fish, not much beef unless it's minced, chicken some lamb and pork - just normal food in smaller quantities. But - no spicy foods whatsoever.
'For me' Gaviscon was the key factor - because of the pains in my joints and bones I asked my doc if there was any alternative to PPI's that I could take. He thought it unlikely to be Lanzoprozole that was causing pain but he agreed to let me swap it for Gaviscon Advance for two weeks, after that I was to swap back to Lanzoprozole, then - after three weeks, I was to go back to see him.
Four days after stopping the Lanzoprozole the pains had gone, just over a week after starting to take it again, they were back. The doc was surprised and didn't know why this was but in a 'back to basics' sort of way decided to send me for an endoscopy. I hadn't had one for quite a while because I'd had no problem with heartburn since starting on Lanzoprozole. As a result of the endoscopy I was diagnosed with Barrett's, then I was asked to go for another one as the first one wasn't quite clear 'in all areas'. The second one clearly showed changes in some of the cells and at that point radio ablation was the proposed treatment. This was abandoned on the day it was to begin because by then there was ulceration in the area to be treated, making it too risky. All of this happened very quickly, just a few weeks. And so, I had the op'.
None of this had anything to do with the pains that had set things in motion but by sheer coincidence, I ended up in exactly the right place, at exactly the right time, and I'm so grateful for that. But this (along with the fact that ranitidine didn't stop my reflux) is the main reason I didn't want to go back on PPI's after the op'.
I don't know how useful this will be to you but I hope it helps a little.
I would also be very interested to see how you control reflux through diet.
PPI's Personally I have no good opinion of using these long term.
Believe most people undergone Oesophagectomy never had been on PPI's long term prior to surgery. Except people who had been diagnosed with HGD or Adenocarcinoma in lower GE junction and lower Oesophagus area.
Drs do admit that long term PPI use is not good. My GP's including. no hearsay here.
In my own experience, I have stated earlier that the acid reflux is negligible in last 3 months post discharge from hospital for IL surgery. Also I notice the pH grade of the acid is relatively significantly less acidic to that pre-op. And when I had severe GERD that time also none of the PPI's helped, as these do not resolve the root cause problems but just treating symptoms to certain extent.
Only Gaviscon Advance did help me greatly for those times of pain.
At present I do not use any PPI's or Gaviscon. And yes I have long term repeat prescription for these.
Now imagine the stomach capacity is reduced, acid production affected by PPIs, this effects lesser absorption of the needed quantity of vitamins etc. Then this may cause other illnesses to take presence.
I firmly believe that if the GP's hadn't wasted time experimenting on PPI's for me and instead a timely NF360 or LINX procedure carried out, this maynot have caused Adenocarcinoma and IL Oesophagectomy thereafter.
I understand for some people PPI's may work, my contention is that the use of PPI's being taken as root cause resolution, which is not the case. Each to their own.
Also see comparison (pre-op cases) of Achalasia and GERD, both are anatomical problems which may require surgical (mechanical) fix and not necessarily medicines. Purely my view.
I just want to add something about PPI medication. The long awaited ASPECT trial has reported a 20% reduction of Barrett's oesophagus patients developing cancer when they take high dose Esomeperazole with low dose aspirin. So although taking PPI long term and without proper reason is not good, there are some for whom the medication is good.
So the advice about knowledgeable medical advice is very sound.
I went from 30mg to 15mg per day about 4 years ago. IL op 5 years. I have not had any problems with reflex. When I brought up the subject of ppi side effects I was informed it was my choice whether I stopped altogether or not.
Please be careful cutting down, I never ever had reflux until after my op in 2009, I tried to cut down on my PPI intake after reading about the long term effects and successfully got it down to 1 or 2 a week. 3 years ago I went for an endoscopy as I had a slight problem swallowing again and it was found that I had developed Barrats probably due to reflux that I didn't notice. I am now back on 60mg of Lanzoprosol a day and would rather combat the long term effects of PPI use than the unnoticed by me effects of reflux.
I personally agree with your comment, everybody is different and some can manage without PPI s. But you have to be careful in cutting them out altogether or trying to have them on alternate days That did not work for me
and the only way is to try and stay on the lowest daily dose possible
Thanks for your comments
Phil
Hi Phil,
I read the articles about long term use of PPI's and it worried me also and so I decided it would be a good idea to try to cut them down and then out.
I should mention that pre op I had always relied on Gaviscon advance, but using only that my Barretts' went on to become cancer.
Post op I was prescribed 30mg morning and evening and after reading the articles I tried removing one for the morning and still take the evening one. This went alright for a couple of months to be honest and so I thought I would try cutting a tablet in half and reducing the dose once again by 50%. It seemed OK for about a fortnight and then the reflux returned with a vengeance and I went back onto one tablet a day which wasn't adequate,
I was waking up in the night with that white foamy stuff creeping up into my lungs and I developed that horrible reflux cough. And ended up back on 30mg morning and evening.
So although for a while I thought it a success, in the long term it was not.
I know we are all different, but I can live with taking the Lanzoprazole, what I still find as my big problem is the weight loss, I look like a stick! But also a bit luckily my wife has discovered that you can buy Extra Small things like tee shirts and singlets which have cheered me up because my usual stuff is now miles too big. Ho Hum.
Good luck with it
Richard
Hi Richard
Thanks for replying on this subject. I currently take the lowest dose of the PPI Rabeprazole daily and after 4 months it's still working. I am still trialling this low dose and my GP has agreed if it stops working I can go back to my previous PPI which was Esomemprazole 20mg However I always take a dose of gaviscon liquid before going to bed and sometimes need another dose through the night. This currently works for me and in my mind is better than having a double dose of a PPI. I,m sure like me you will continue to experiment with the daily dose but it's important that we keep on a daily dose.
Keep in touch
All the best
Phil
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