Oesophageal Patients Association
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WEDGE PILLOW --from Medcline -- £200 plus Shipping,Duties & VAT

This is a very clever product, anatomically well conceived and beautifully manufactured. I am sure it is a great boon to reflux sufferers who have normal anatomy. The cost appears high in the UK but this is a very small price to pay if it helps to avoid the disease spiral from eosophagitis to carcinoma via Barretts.

Unfortunately it has no relevance to patients who have experienced Ivor Lewis surgery and whose plumbing is radically different. Indeed it could be potentially dangerous in increasing the occurrence of acid/bile reflux and the risk of subsequent aspiration pneumonia.

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From all that I've read, lots of people recommend this post surgery! What are you basing your information on? Has some research been done? If so, where and when?

Thanks, Kate

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I am not aware of any professionally informed opinion which recommends this product as being suitable for a gastroeosophagectomy patient post surgery. Whilst the clever armhole solves the almost inevitable roll over change of position danger; sleeping on the left side is contra-indicated owing to the surgical removal of both the upper and lower eosophageal sphincters as well as the pull-up of the reconstructed stomach tube into the chest. From that completely unnatural position it is all too easy for chyme containing hydrochloric acid, bile, and pancreatic enzymes to trickle the few inches into the lungs.

If your husband is fortunate enough to be offered surgery it would be wise to bear in mind that the single greatest non-malignant killer of ivor Lewis patients is aspiration pneumonia.

I myself was discharged from UCLH, having been in ICU for that condition, only last week!

As I pointed out I am sure that the Medcline product is marvelous for sufferers with normal upper GI anatomy. Admittedly a plain wedge is less risky than pillows alone; the safest solution being a fully inclined bed. But even that is not guaranteed to maintain an heavy sleeper prone on their back, with sufficient hydrological differential between the level of liquid in the gastric tube and the entry to the airway.

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Thanks for that. So what's the solution - other than an electric bed (expensive)? I've read that "elephant 's feet" (from Amazon) under the head end of the bed can help, but then you can slide down the bed in the night! An electric bed - with an adjustable head and bottom end - apparently means you can get the angle so you are raised, but the bottom is also slightly elevated to prevent sliding.

Sorry to hear of your experience but pleased you are on the mend now. What have you been recommended and what are you going to use to try and prevent this happening again. It's awful to think of going through chemo, major surgery etc, and then to have this happen.

Best wishes, Kate

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Hi Kate

If you've read what I said to Spanner you will understand why I have almost despaired. There just doesn't seem to be any solution and I work quite hard on the problem. I dabble with inventing and have a few patents in bio-engineering so the sense of failure is acute.

I should mention that I am at the extreme end of the spectrum having already lost one lung to metastases and also having a cholecystectomy --removal of the gallbladder which means that bile is excreted continuously, night and day regardless of food constituents.

Your Husband is most unlikely to be affected that seriously and could even get off Scot free.

It's difficult to give a comprehensive explanation of what is an hugely complex subject as this site has no facility for detailed pictures, diagrams etc. The extent to which the whole area has been resolutely ignored by the medical profession is astonishing; partly because it is so intractable and also because until recently there were so few long-term survivors. Happily that is changing in part driven by the popularity of bariatric surgery for diabetes and obesity.

Do you know a good cartoonist? They could have a field-day with some of my experiments......there was the time I slept for several weeks in a surgical spinal brace. On another I donned a parachute harness tethered to the headboard. My wife summed it up when she observed " it's a bit late to be taking up S & M!"

I had great sport with the brand new all singing and dancing (and no doubt very expensive) bed I had in hospital. As you so rightly say there is a strong tendency to slide down the head end slope but this can be counteracted by elevating the foot end, albeit at the risk of ending up in an heap in the 'V' valley. Nevertheless I had no reflux and also no dumping.

I've had a wheeze about this and will be reporting back after another round of prototyping.

I wish you both the very best.

GW

PS: At this worrying winter time I would like to reassure everybody by recounting that my recent sampling of the NHS was exemplary.

111 answered promptly and sent three paramedics within a three hour window. They arranged my admission at around midnight on a Saturday. I had a fifteen minute wait in the ambulance then was admitted to an isolation room in A & E and triaged within one hour, moved to ICU and stabilised there within three hours then returned to an isolation room in A & E. A bed on the main surgical ward became available in time for breakfast. The hospital was very busy with flu cases but all staff at all levels at all times exhibited a quiet and extremely good natured calm - several were real heroes. Just goes to show: it can be done.

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Thank you so much for your detailed response. I had read your other posts, so am a tad more informed(?)!

Must admit that I was totally in the dark about how very serious this can potentially be. Obviously I'd read about the need to sleep upright to avoid reflux, eating earlier, avoiding certain food etc etc but had no idea that reflux could leak into the lungs during sleep.

I am amazed that this isn't flagged up more - I just thought a wedge pillow/ several pillows would be the answer. Clearly not always. We haven't yet seen the surgeon so I could well be doing the team an injustice as it may well be raised then. My husband has just finished chemo, is having his repeat scan tomorrow so we'll know more when we see the surgeon on Feb 8.

It would appear (as one would expect) that everyone is different and thus find different solutions to the problem. I am so sorry that you have had such a dreadful time but pleased that UCH looked after you so well. I trained at Barts, but my sister went to UCH. We're both retired now though so well out of date with current practice. In my day all the beds were metal framed with the pull-out head ends for sitting up! Having unfortunately had a stay in hospital myself early last year, I can't say that I found the current electrically adjusted beds at all comfortable!! Doubtless though the ones you buy for home use are much better - I would hope so anyway!

Thanks again for your helpful input and I wish you better health in the future. Kate

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Many thanks Kate. My Dad was a Barts man; they seem to have got into a bit of a muckle of late. Me - Kings, but I absconded prematurely!

When you have your conference do enquire what they propose appropos the gallbladder, subject of course to inspection.

I was very cross at waking up to find mine gone on the pretext 'that we can't go in there again'. But the brilliant Chinese guy who did my lobectomies managed OK, he did grudgingly admit that the adhesions were 'charrenging'.

The reason I am banging on about this is that Bile Acid Diarrhea is beyond horrific.

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That's interesting! Perhaps your dad was there when I was? 1967 - 1970! A lifetime ago! It was a very good hospital then - shame it seems to have gone the way of so many lately! Too many chiefs and not enough injuns (as my dad would say)!

Thanks for the tip re the gall bladder. The more I hear about this op, the more I wonder whether it's worth it - i.e. longevity v quality of life. Still that'll be my husband's decision to make that's why I'm trying to arm ourselves with as much info as possible so he can make an informed choice.

All the best, Kate

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Do you happen to know if there is a UK distributor for this? I looked on the medcline website and they don't seem to ship outside the US

I had a total gastrectomy and oesophagectomy 5 years ago - why would you say that this pillow wouldn't work for those of us with special plumbing? My specialist has recommended propping myself up (doesn't work I slip down) or an electric bed (can't afford one) to prevent reflux for ages

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Sorry, but if I knew of an UK importer I wouldn't tell you because IMHO it would harm you.

Of course this is my personal opinion, but that is based upon having been closely associated with the NHS for more than fifty years including several years of anatomy, attending umpteen postmortems, working in a pathology lab, enrolling in medical school, blah blah; but not least having suffered with the condition for 26 years. Sad to relate I practice as an engineer because machines are less hassle than people.

Have you looked at second-hand ex-hospital beds?

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Ok - I'm still unsure why you're saying being propped up could be more dangerous to me than being laid flat and suffering from reflux when so many others have said propping yourself up can help alleviate the issues. Also to be clear I try and handle this through diet and not eating too late etc but some nights it just seems to occur without reason.

Also, thank you for the suggestion of an ex-hospital bed but I'm 31 and in a relationship and that's the last last last resort I would ever entertain - this disease has taken enough away from me already

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No no ......I'm not saying that being propped up is dangerous, quite the contrary. The problem is how to remain propped up.

What I am asserting most strongly is that the expensive American device is unsuitable for people who have had an eosophagectomy.

You say you have looked at the unit on Medclines' web site.

The arm-locking cutout is a very clever way of stopping you (1) slipping down and (2) stopping you rolling into another unsuitable position.

BUT that very arm-locking design forces you to stay on your left side all night. Owing to how the tubes run in the body after an Ivor Lewis being on your left side causes the fluid level in the new stomach tube to rise up and it may end up higher than the level of the pharynx whereupon it will immediately drain down into the throat with catastrophic consequences.

After my op, and still in our forties my wife and I were able to stay in our large Swedish bed which had separate mattresses on separate adjustable slatted bases.

However being just a little older than you now we have agreed that my snoring and reflux coughing and her restless leg warrant separate beds altogether. Surprise surprise it turns out that 'visiting rights' are more exciting than being in each other's arms. That's what i call a result.

If you are confined to a small double with one mattress then I'm fresh out of ideas.

This is such an important issue that I personally would prioritize the necessary investment over cars, holidays and most everything else.

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Thank you for that answer - I didn't realise that the device didn't allow you to sleep on the other side

I'll admit I'm reluctant to get an adjustable bed simply due to feeling 'old before my time' but maybe I need to put my pride back in its box and save up for an electric bed instead as I'm terrified of the damage and potential outcomes that could occur everytime I experience reflux - it means that this rubbish disease takes up more head space than it deserves!

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Hi Spanner,

I'm not promoting any product/solution as my husband has yet to have surgery. However, I have done some research in advance and you are of course quite entitled to make your own decision and try various methods to see what works for you.

Amazon U.K. do a selection of wedge pillows (do read the reviews), and I've also read that "elephants feet" bed raisers at the head end also work for some - although you need to opt for the 5 1/2 ins ones to make it a sufficient lift. I must stress that I am not speaking from experience - just passing on some tips that are working for others. It appears that it's a question of trial and error. I have no idea what we will do when the time comes, but I fully intend to raise this with the surgeon when we meet him in 2 weeks time.

Hope you find something that works for you. All the best, Kate

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On this question of beds, propping up the pillows and so on, the situation as I remember it from previous posts, and without disagreeing with any of the above posts, is as follows:

People do get on well with adjustable beds, especially those that go into a W shape that support the knees and thereby probably help with the slipping down problem.

Apparently IKEA do an adjustable bed, but I do not know whether that is still the case, but it was the cheapest available at the time.

The 'slipping down' problem has been reduced by some, either by using a mattress topper (try Dunelm) or a duvet under the bed sheets.

People have experimented with putting bricks / blocks on the floor under the bedposts; or putting extra pillows / rolled blankets under the mattress. The potential for adjustments is there, and it tends to be cheapest.

There a variety of wedge pillows that can be expensive, and you never know how good they will be until you try them. The OPA do a special offer / subsidised rate on one brand that you can pursue through the OPA website or through the helpline 0121 704 9860

A good night's sleep is a great blessing, and I suspect we all toss and turn in the night even when we can get to sleep. It does seem that there is quite a bit of trial and error involved, and indeed frustration at buying something expensive with the risk that it might not work. But the health risks and distress of reflux during the night when we are more-or-less horizontal does make this an important issue.

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Interesting reading, I had a total gastrectomy 5.5 years ago now and have used 3 to 4 pillows, bought this wedge that did nothing for me doesn't take you high enough, also bought an adjustable back rest that was better but in the end decided to get an electric bed that is just great with adjustable head and leg positions. Yes can be expensive but at the end of the day being as comfortable as possible has to be a priority as far as reflux goes. I still get bile reflux but not as much as I did. A friend of mine who had same operation as myself was using the adjustable back rest and the hospital gave him a rubber type thing that his legs were on that stopped him slipping down the bed? something that was never offered to me. Hope this helps

Rob

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There appear to be many variations on this theme. I recount my own for what it is worth. I have the top end of the bed raised on 4" wooden blocks and, additionally, a 4" wedge underneath my mattress. I also place a pillow underneath the mattress at the foot of the bed. This combination limits the amount of slippage all preceded by Omeprazole and Gaviscon Advance.

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Great minds.............that's exactly what I do, excepting the medication.

I usually only come unstuck if, when deeply asleep, I turn onto one or other side ( usually left facing) and draw my knees up into the foetal position. My theory is that the trigger for this manoeuvre is discomfort from being either too hot or too cold, with heat seemingly producing greater restlessness than cold.

Regarding medication:-

(1) I have a deep suspicion of the damaging effects from taking PPIs long-term.

(2) My reflux is predominately bile for which PPIs have no efficacy. The palliative effects of surfactants is not long-lasting. Since I am going to experience reflux in any event I would rather (A) it not be contaminated with inert substances which will inevitably lodge in the lungs and (B) the worse the pain the quicker I will be awoken and be able to minimize the extent of the aspiration and start clearing the lungs with physio and coughing.

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Interesting. I do share your concern regarding long term use of PPIs which I split between a night dose and a morning dose. I have reduced my morning dose but , having felt some acid reflux during the day after reducing to nil, I have lacked the courage to extend the experiment. I will reconsider.

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My daughter saw that wedge pillows were on sale for £6 99 in Lidl today

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Gutless thank you for your posts and for going into detail. Very helpful .

Can I ask why your gallbladder was removed ? I may have missread your post but it seems as though it was taken out as a preventative measure ,done because,if needed , it would have been difficult to carry out after the Ivor Lewis ?

Or am I not understanding ?

Regarding individual propping up methods ,I rely on a plethora of pillows ,some of which I have on either side of my torso in an attempt to limit side sleeping .

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Hi violetqueen

You are absolutely right........my Ivor Lewis surgeon said he took it out because if I developed intractable stones in the future it would not be possible to go in there again; owing to the adhesions arising from the first procedure.

In the normal, healthy abdominal cavity all the various organs slither about one another aided by a naturally secreted lubricant. But when interference takes place things tend to seize up and stick together.

I was furious as the unpleasant side effects of the cholecystectomy greatly increased the familiar discomforts from the gastro-eosophagectomy.

But an open cholecystectomy is a pretty fiddly operation at the best of times and would be challenging if the field was obscured/obstructed. Today's modern laparoscopic technique I guess would be impossible. So, in retrospect it probably was the right thing to do; given the state of the art twenty six years ago.

But the surgeon who remove the upper and lower lobes of my right lung eighteen years later coped and saved the middle lobe, although he did admit it was pretty difficult.

I must confess I was scared at Xmas when I developed pneumonia in that remnant as, in the event of the antibiotics not working, would anyone be willing to attempt a third thoracotomy to remove the rotten remains and postpone my demise yet again.

We ignore reflux at our peril!

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If you look in charity shops there are often second hand eclectic beds going for around a £100. When it gets to me I found my reclining chair is actually the most comfortable place to sleep. I know this sounds crazy but the sun beds that tip backwards and are balanced if you put a folded double of king size duvet on it to lie on and then add pillow and another duvet its a comfortable bed which I can easily take with me if I'm staying with friends or camping etc,

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Great idea ....as long as you are petite, not 6ft 3ins like me !

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liz - good tip about second hand electric beds and reclining /garden chairs . American posters often mention their laz e boys !

gutless - you've been through the mill ,out the other end and back again !

gutless ,I'm interested to learn more about research on long term use of PPIs .Could you link to some articles you'd recommend ? Though I know you have a pretty technical mind and I guess articles you read might be hard work for the less technically minded .

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Hello violetqueen

Well recycling is supposed to be a virtue.

On research:-

I am privileged to have access to many of the 'trade' journals BUT many charge $35 per article (scientific publishing is one of the great rip-offs of our time) so I only keep those which are 'open commons' licensed. Having saved them I don't keep the URLs so cannot go back to the source unless I re-search. In a classic IT gotcha I have been saving for the last five years in an obscure format which has now been dropped by Firefox. Ugh so one of these days I have to flog through 2 gigabytes worth and convert them, so I have nothing that I can email you. But henceforth I shall send you the links for anything I come across which seems relevant.

Perhaps that should be here so that anyone else can have access?

You stimulated me to post twice on the subject today.

Were I stood in front of the class I would argue that you must proceed from first principals so what are PPIs? Here is your starter for one----

[ tell me when to stop]

ncbi.nlm.nih.gov/pmc/articl...

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Efficacy of Inhibition of Acid Secretion

All of these drugs inhibit the gastric H,K-ATPase by covalent binding, so the duration of their effect is longer than expected from their levels in the blood [28].

However, PPIs cannot inhibit all gastric acid pumps with oral dosing because not all pumps are active during the 90-minute half-life of the PPI in the blood.

Because PPIs have a short half-life, only 70% of the pump enzymes are inhibited. It takes about 2 to 3 days to reach steady state inhibition of acid secretion.

The pump protein has a half-life of about 54 hours in the rat [29] (and probably in humans). Thus about 20% of pumps are newly synthesized over a 24-hour period, and there may be greater pump synthesis at night than during the day. In addition, bedtime administration of PPIs will not add to inhibition of nocturnal acid breakthrough, because the drug will have disappeared by the time nighttime acid secretion is evident. Assuming that about 70% of pumps are activated by breakfast and that the PPI is given 30 to 60 minutes beforehand, it can be calculated that steady state inhibition on once-a-day dosing is about 66% of maximal acid output. Increasing the dose has virtually no effect once optimal dosage has been reached. Increasing the dose frequency does have some effect; a morning dose and an evening dose before meals results in about 80% inhibition of maximal acid output.

Well goodness - a tad too complex for me .

So .... a morning and evening dose will ( after 2 or 3 days ? ) taken before meals has the best effect in lowering the acid levels ?

I don't understand ( amongst many other things ) why "bedtime administration of PPIs will not add to inhibition of nocturnal acid breakthrough, because the drug will have disappeared by the time nighttime acid secretion is evident." if "the half-life of PPIs is about 1 hour (9 hours for tenatoprazole), but the duration of acid inhibition is 48 hours" .

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Extraordinarily beautiful particularly when you consider that this system is the product of random mutations over millions of years.

There is huge hysteresis built into the system with which the human intervention occurs.

Firstly there is the delay curve of the oral availability of the PPI. Then, most importantly is the fact that the PPI acts at one remove, that is to say on the enzyme that promotes the acid secretion. This step introduces a significant delay. Meanwhile the PPI concentration is dropping as a result of its half-life - in nominal steps 1/2, 1/4, 1/8, and so on and this step is dramatically varied by the ethnicity of the patient and efficacy of their liver enzymes.

Now as the acid secretion ramps up that product is bound by a bond which decays relatively slowly and so does not become re-available for several hours, out-of-step with and unrelated to the other dynamics. This last reaction also exhibits tremendous variability given that its' reaction rate is inversely proportional to the pH that it itself is generating.

Hence it takes several days for the whole shebang to come in to equilibrium. Absolutely trivial? Hardly, when it lets us understand the timing and frequency of dose and, even more fundamental how to design new and better variants of the drug.

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violetqueen - more reading

A good opinion as at 2013:-

Proton pump inhibitors and risk of vitamin and mineral deficiency: evidence and clinical implications

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Proton pump inhibitors and risk of vitamin and mineral deficiency ...

ncbi.nlm.nih.gov/pmc/articl...

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We are pleased to help patients wherever we can!

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