Hi - has anyone exhausted the list of PPI's and gone back to the specialist to inform them that they are not working. what happens next (UK)? thanks
Great question ! Looking forward to the replies. I’m in the same boat, been on a load of different medications for the last 3 years, Esomperazole, Lansoprazole, Rabeprazole, etc nothing has worked. When I went back to the doctors he just said we have tried everything we can, what do you want to do next. I suggested surgery and he said no as you will just be back on the PPIs after a few years as surgery doesn’t work. Learn to live with it. Shocking !
Hello I’m sorry you are having so much trouble. I had the Nissen fundoplication surgery about a year and a half ago as I had esophagitis gradeD. It was bad. The surgery was only a 180 wrap because I have an autoimmune disease where swallowing at times is a bit difficult. The Dr didn’t want to do it too tight. Therefore they only did the 180. Well I was then diagnosed with 7 ulcers this past August but I was doing 80mg of Nexium before surgery then went to 40 after and now down to 20 mg. I am also taking a teaspoon of coconut oil morning and night and 8 oz of aloe vera juice daily and it has really helped. You may want to try it. I also take the DGL chocolate coconut licorice if I have pain as it really helps too. I was so tired of the pain and everything that goes along with Gerd. I wish you all the luck. I hope eventually I can get off all meds. Best of luck. Lorray 💕
Thanks ! Some nice tips there. I have esophagitus grade a and 2cm hiatal hernia, I’ve been told I’m not really a candidate for surgery as hernia is too small.
I am in the UK. I just don't know what happens when you have exhausted all medication and you are still getting it. Surely you cant be told to live with it because you are risking your own health long term. I go for my endoscopy Tuesday and will find out whats going on with me. I will be asking this question though. Are any of you in the UK? Jo
Yeah I’m UK. Had two endoscopies.
Do you still suffer then? surely you cant just be left to live your life with daily acid? its dangerous
Yeah still suffer. The doctors thoughts is that as long as I’m taking either the PPI or Ranitidine and Gaviscon Advance daily then the Acid should do me no harm. Unless I have surgery then I have to take these for life, I’m only 37 so not keen but surgery privately is about £10k.
do you suffer all the time? daily? how can they say that the acid will do no harm when it can lead to barratts? why would you have to have to take them for life if you have surgery???
Good questions ! I think the idea is the PPI and Gaviscon is working even if I feel it isn’t working so it shouldn’t get any worse, yes I still have symptoms everyday and to answer your final question I think you can come off the medications once you have had surgery but getting surgery on the NHS seems a rather hard thing to do, for me anyway.
Hi.
I tried all the ppi too over the space of about 15 years, suffered since I was a child really..
When I started on my final ppi nexium I asked the gp if there was anything else I can do and she said fundiplication but she would have to apply for funding from NHS and I would have to have some tests to make sure that I was suitable. 24hr PH, manomatry and camera.
I got the funding and the tests, I had my surgery June 2016.
The acid has stopped, I can burp without my food coming up.
I still get a bit bloated and can burp and fart for England.. I'm glad I got it done..
Regards
Margaret.
Short answer: it depends.
You may not actually have acid reflux, so further testing is warranted. You should have the following tests. (Maybe not all of them, but a good number.)
1) Endoscopy, to see if there are signs of anything else, like eosinophilic esophagitis, which can cause similar symptoms, or a hiatal hernia.
2) Barium swallow: thisnwould Show reflux and may show the hiatal hernia. It would also show other structural abnormalities.
3) Esophageal impedance/manometry: this would Test our how well your esophagus works. If it doesn’t work well heartburn may Be from stuff sticking around too long, or it squeezing at the wrong times or in an abnormal manner.
4) Bravo 48hr pH study: this will test out how many reflux episodes youre having, and if they’re acidic or not.
5) 24 hr manometry: this is like the 48hr study, but it’s a lot more uncomfortable. It also has the advantages of seeing how high stuff is refluxing. You may not be getting much reflux, for example, but if it’s gojng very high, you’ll feel it all the more.
Ask for at least some of those tests. It may be that you don’t need PPI’s, but something else. Or it may be that the PPI’s help some, though for different reasons than expected, and that you actually need something else (like budesonide or sucralfate).
Best of luck.
will they not agree for you to do it Stuart? where do you live. Im near chester. have you heard of the stretta procedure?private its 5-6k?
thanks so much Margaret. so you have to apply to be a candidate in other words. that makes sense. can you eat and drink normally now too? x you made me laugh with your post!
Norb this response is fantastic. im going to print it off and keep this for reference. so basically until i kick start the ball rolling with the endoscopy next week i wont know. i take it if they cant find anything i will get sent for further tests like above? what alternative is there to PPIs?????
No when I last went to the doctors in December I was just told to try and wean off the PPI and move to Gaviscon Advance and maybe Ranitidine. I have heard of the streetta procedure it sounds interesting but no idea if it works ?
Hi joe hope this helps i had same problem with docs and lack of support with acid i came across mastika and slippery elm best thing i ever did takes about 4 weeks to work properly i felt relief after 1 week im staying on them 2 at night before bed 2 in the morning 30 mins before breakfast then when you get relief about 4 weeks change to 1 morning and night , slippery elm 10 mins before main meals 1 cap ....... break open dissolve in small amount of water then drink down in one tastes bit like mild bark i quit like it this lines your throat please read up about the products very interesting reading i ger mine from amazon 500 good luck please let me know how u get on im staying on these
oh and stay off bread for a while till things calm down that stuff really is bad for acid also chocolate drinks and chocolate and coffee when all calms down you will be good to have them back good luck
Hi Jo,
I'm in the UK and have had all the symptoms for the last few years. I've got to the stage that I'm fed up taking tablets + Gaviscon every day.
I originally had an endoscopy in summer 2014 which showed inflammation in the oesophagus and a hiatus hernia. However due to the hospital also discovering that I had a large lump on my thyroid and a malfunctioning parathyroid gland (upsets your calcium levels and causes stomach pains), my gastro issues were put to one side. I started taking Ranitidine at the point and have had to increase the dosage since - now on maximum dosage.
Summer 2017 it was getting worse and I got referred back. I had another endoscopy in September and then the manometry and PH test at the beginning of December. I saw the surgeon on 27th December and am going for surgery on 5th Feb.
Still on the ppis. I go back to the docs a week today. I am a lot better but still not going. i really want the tests now to tell me once and for all whats causing it. the endoscopy revealed mild gastritis but my doc said the tablets should clear this (Esomprazole/Nexium). x