Whys and Wherefores

Our recent Zoom session this last Tuesday evening was well attended again with 42 people dialling in. We have a great mix of participants from new patients to former 10-year-plus veterans, as well as Consultants, Dietary Clinicians and Special Nurses. So not only are we privileged to have such a good audience, but it means our discussions are worth listening to.  

Tom Doust, patient and supporter of OOSO kindly gave a quick update of his volunteering as a patient representative on an NHS 'Public and Patient Involvement (PPI)' clinical trial review group. The point being his input make's it much simpler for patients to understand and engage with complex science-based trials, perhaps otherwise missing opportunities to find the treatment that could benefit them. Thanks Tom! we really appreciate your volunteering and support.

And then Bruno entered the fray, a leading Consultant Surgeon that many of you will know, and possibly even been under his laser guided scalpel! Bruno, in his usual style, gave us a carefully constructed and detailed insight to the whys and wherefores of the workings of another kind of PPI, Proton Pump Inhibitors, such as Omeprazole, that quite a few of us rely on to prevent particularly nasty acid reflux from occurring. Here's a summary of some of the main points discussed:

  • Acid forms from saliva in the mouth and lining of the oesophagus but mainly at a cellular level in the lining of the stomach;
  • So full gastrectomy patients, having had their entire stomach removed in fact then produce very little acid and experience little or no acid reflux, meaning that PPI medications are rarely needed;
  • However, partial gastrectomy and full oesophagectomy patients find that acid production continues in the stomach, so post-surgery without an upper value to prevent regurgitation, acid is more prone to reaching the mouth and windpipe;
  • So, partial gastrectomy and full oesophagectomy patients quite often require PPI's to lessen the production of acid and the risk of nasty reflux events;
  • PPI's such as Omeprazole work to prevent or block a 'cellular level pump mechanism' that produces high volumes of acid from the stomach lining into the stomach sack;
  • Whilst this does reduce the effectiveness of the stomach in absorbing vitamins and minerals it does not affect the overall digestion of food, which mainly takes place lower down in the small intestine;
  • PPI's are prescribed by your GP. If required, a note from your lead clinician will ensure the prescription is put in place;  
  • Patients often take PPI's over the long term, for many years, the consensus amongst clinicians appears to be that the benefits out-weigh rarely occurring side effects; 
  • PPI's take about one hour to start working after being ingested and are effective for up to 12 hours depending on the dose;
  • Acid reaching the gullet and wind pipe can be painful and alarming - there are many sensitive nerve endings in the gullet, windpipe and mouth which respond acutely to acid. However, actual damage over infrequent events is thought to be minimal. More frequent events should be tackled and avoided using PPIs and other methods; 
  • Other ways to reduce or manage acid reflux include not regularly eating too much volume of food, which can over time stretch the new stomach and increase food evacuation times, causing more volumes of acid to be present;
  • To not eat too late in the evening, typically 3 hours before bed, allowing food to pass through to the small intestine;
  • To avoid fatty, oily foods in the evening which have a tendency to promote acid production;
  • To sleep on a slight angle with either more pillows or an inclined bed;
  • It's important to take full spectrum A-Z vitamin supplements to help counter poor absorption and to have your iron and B12 levels checked reasonably often by your GP;  
  • If you're feeling tired and lethargic and your energy levels are low, additional iron and quarterly B12 injections can make a big difference.

We'd all like to thank Bruno and Liz for their very engaging discussion on the night, it makes a huge difference having the experts we trust give us the advice we need.

At the next zoom, on Tuesday 15th November @7pm, we'll have a speaker from Bristol University talking about recovery and side effects, and we hope a summary from Anne and a colleague about what their role as a Special Nurse entails. It'll definitely be another good one - we hope you join us for that!

Café Catch-on's

We plan to hold our next catch-up this coming Monday, yes that's this Monday 10th October! at the FROSTS Garden Centre in Woburn Sands from 12.30pm. So far there's 8 of us planning to meet up, and if you'd like to join us then please drop me a line here.- we hope to see you there! 

(PS: I mentioned "Fosters" in our last newsletter, instead of naming FROSTS! which got my leg pulled for thinking of the cold blue tin in my fridge!!) 
Looking ahead, our next catch up will be in early November at the Haddenham Garden Centre, not far from Thame.  We'll let you know details a little nearer the time. 

If you would like us to schedule a café catch-up near you - please just
drop me a line with suggestions. 

And Finally - Thanks

Like all charities OOSO benefits from, and is grateful for, donations that help to fund the work we do. Some of these donations are regular but many are ad-hoc and anonymous. Jackie, our Patron, has asked that these donors are not forgotten and we agree that a huge thank you should be sent to everyone who has contributed and in doing so has eased the path to recovery of many of The Churchill's patients. Many, many thanks.

Kind regards
Matt Carter
Chair of the Trustees
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