No PPI’s

[Singforyoursupper]

Do you think it’s possible to NOT get reflux?

I am a year post oesophagectomy and my tumour was high (almost in my throat) so the join is high and I have minimal oesophagectal tissue left.

I was on PPI’s for months then I switched to Gaviscon to see if that would do, and now I’ve stopped taking that after experimenting to see if I could cope with nothing - and I seem to. However I do worry that silent reflux may still be happening and might cause trouble further down the line.

Does anyone have any experience of this to draw on?

[Heathwaite]

As far as I know their are 2 types of O/ C Squamous which is at the top half of the gullet and Adenocarcinoma which in my case was at the junction of the gullet and stomach.

I had my operation 14 years ago and in that time I have spoken to many patients. The general conclusion of these conversations was patients like you generally did not take a PPI but some did . However the majority of patients like me take them. For the first 7years after my operation I did not take a PPI but reflux steadily got worse when active in the day and caused a sore throat. My consultant advised me to take a low dose PPI and it worked for me. My quality of life improved and I will continue taking it for life.

But everybody is different and if you can manage without it

all the better. But speak to your GP and get his advise

All the best

Phil

[Singforyoursupper in reply to Heathwaite]

Thanks Phil

[liz_crisp]

I thought I could cope without PPis but 5 years on and a few months without them I was diagnosed with Barratts at a routine endoscopy appt so I will take them forever now.

[Popsic]

Hi,

I am 7.5 yrs post op and I've been on Ppi's the whole time, I've cut back from 40mg to 20mg but I started experiencing sore more and more, then had a really bad reflux night and cried with the pain. I've heard so much about ppi's and got scared, but it seems I will be on them for life.

[Singforyoursupper in reply to Popsic]

Thanks Popsic. Sorry you are still suffering and Best wishes

[Popsic in reply to Singforyoursupper]

Thank you, it is what it is and I'm still here😏 good luck to you, you will find great inspiration in this group

[Popsic]

Sorry, meant to have said, sore throat, also back up to 40mg a day.

[Mark4]

Comments below make sense I had all œsophagus removed and manage acid with gaviscon and small meals not too soon before going to bed

And lots of pillows!

The hospital did say gaviscon lines and therefore protects the throat so that last thing at night makes sense as it will protect the tissue from reflux

I’m not sure whether the location of the tumour has a bearing on things of the whole œsophagus is removed

Good luck

[Singforyoursupper in reply to Mark4]

Thanks Mark4 - I'm going to ask my consultant I think - as there are things in Gaviscon I'd rather not consume for ever too if I dont have to!

Have you heard about the wedge pillow from the OPA shop? (I splashed out on the memory foam version) and its excellent as it inclines the body from the waist very gradually. Also we put the back legs of our bed on one brick (doesnt seem to affect my husband!) so in the end I only use one normal pillow.

Best wishes

[Mauser1905]

Post oesophagectomy reflux (either acid or bile) is a colateral damage and majority patients learn to live and manage it successfully. Everybody is different and manages differently.

Normally I dont need Gaviscon Advance, however if I am travelling long distances, overnight, sleep pattern disturbed etc then I get help from oral suspension in the night and daytime chewable tablets when travelling etc. Note that these are temporary measures only to balance my disrupted daily routine and not everyday dosing.

I do not take any prezole and have very strong opinion about it. (for both GERD management and post oesophagectomy survivorship.)

Oesophagectomy patients should be more wary when taking prezole because the compromised stomach digestion, and further acid suppression can create further issues. The calcium absorption is an issue and for the average age of the survivors this is critical to avoid any bone related incidents and healing will be much longer than otherwise or complicated.

Without the Sphincter any content withi the New Normal stomach is going to travel in unrestricted direction.

[walking-in-wales]

I'm just about two years since my oesophogastrectomy & was on PPI (lansoprazole), but weaned myself off them over about 3 months because of potential long term impact of reduced stomach acid. No apparent adverse effects of no PPIs. Actions that probably help include elevated upper body sleeping position & diet management - volume & type. Some foods are more acidic & others promote acid release from the stomach cells. Also being mindful of allowing for some stomach emptying before activity that might compress stomach or promote reflux, such as activities involving lots of bending over like gardening.

[Singforyoursupper in reply to walking-in-wales]

Yes , I agree . Gardening is sometimes the worst. Thanks w-in -w