Hi, I am 4 weeks post op for oesophageal cancer so early days I know. Been sleeping in the recliner as propped up on pillows in bed was making my butt hurt; tried sleeping in bed only slightly elevated on 2 pillows and slept ok for 2 nights. Third night I think I got a little too flat and next thing I knew the horrible reflux taste was all consuming. I was wondering if it is only the issue of reflux that is the reason for recommending (from the hospital and doc etc) for sleeping propped up (almost sitting up) or will it affect recovery if on a much lower incline?
The reason I ask this is because when I sleep in the recliner it is all the way back very little incline and I sleep ok no probs. Is this inclined sleeping position something to expect for the rest of life? Have any fellow survivors here tried the various reflux pillows on the market and are they any good? Has anyone had to resort to an adjustable bed to get a good nights sleep; I know these are available at reasonable prices now but how do they compare in iffectiveness to a reflux pillow? How about raising the bed head? Just how far inclined do you need to be to be safe from reflux? The suggested 30-40 deg angle I have seen on various sites means a wedge cushion would need to be around 2 feet high at the highest point (assuming that the wedge extends down to just above the butt; so placing the whole torso on an incline rather than bending midway). Reflux pillows seem to be of rather modest heights around 6 inches!
Was thinking of having a custom wedge pillow cut as plenty of places online will supply custom pillows and at around half the price of the upper range refluxe pillows on amazon etc.
Any input is most welcome and if I go ahead with the custom pillow I will post details after giving it a try for a week or so.
Regards to all, Malcolm.
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As far as I know the only reason for sleeping propped up is the reflux issue, and that will always be with us. We're not going to grow a new valve at the top of our stomachs to prevent the contents spilling.
Some people find they have to sit almost upright, some can lie almost flat, it depends on exactly what was done during your op.,we're all slightly different inside. You say you've slept OK on just two pillows, so three pillows should be safe for you. But it is trial and error.
I really didn't want to change my bed, so I have an elaborate pile of carefully placed pillows, and it works very well.
I found the main problem was that I slid sideways off the pillows, so I was lying diagonally across the bed Then the reflux was horrible. So now I have pillows each side of my head and shoulders, as well as under them, to prevent me sliding sideways, and another under my knees to prevent me from sliding down the bed. And another under my lower back so I'm not folded in two. I know it sounds complicated, but I've been doing it for five years now, so I find it easy, and "do able" if you're away from home.
I know a lot of people like the adjustable beds, but they remind me too much of hospital. I know they work very well for some people. I hope you soon find what works for you.
Hi 5 years down the line I have gone for an adjustable bed after using piles of pillows, it means I don't slide down the bed and if I have a restless night I am not forever waking up with a horrid burning feeling. I did splah out on a tempura mattress as well and find it fabulous just maybe too comfortable
I am 14 years post op and have tried numerous wedge pillows but in the end had to resort to an adjustable bed. I found I slipped down on the wedge and ended up getting reflux too often. The bed is much better. I need to sleep virtually upright to avoid any reflux (and even then it can sometimes happen). The bed is very comfortable!
My husband, 3 years post-op, has an electric bed too, having tried a wedge pillow. As well as raising the head-end, he also raises the foot end which stops him slipping down. He seems to sleep pretty well, without reflux, and it has been worth it.
When we go away, we take a small fairly hard cushion with a non-slip cover, which he puts under the sheet to support his bottom, and he uses lots of pillows to prop up chest and head. It works okay, not as well as the electric bed though.
I was a "slider," too, when on pillows, and the thought of any acid gurgling around anywhere near the surgeon's delicate work, let alone ending up in my mouth, made me spend the money on an adjustable bed. We bought a pair of 3ft divans that adjust independently, but 2'6" are available, too. Word to the wise - it took Benson's a few weeks to deliver ours - I think they make them to order.
Subject to getting your doctor's signature on a form that the retailer will give you, you should be able to reclaim the VAT. For some reason, not all adjustable beds will qualify - so check first. On their website, it says a VAT refund is only available if you're registered disabled, but that wasn't the case a few weeks ago when we bought ours - the op was enough to qualify, and we had a cheque back for the VAT a couple of weeks later.
If you go to them, by the way, you'll get a better deal in store than online - the sales chap was very amenable to a sizeable discount! Probably the same at their competitors.
Finally - if cash is tight, you can sometimes find them in second-hand and charity shops, like Emaus - I saw one there only last week - and there are lots on eBay, too.
Thanks to all who replied seems the bed is the best option for greatest success. Think that as far as I can tell (so far but early days) I dont need a massive incline so will try a custom long wedge pillow first.
Hi, I made wooden wedges to put under the feet of the head of my bed, using bannister parts, they were about 3-4 inches high. I found I only needed them for about 12 weeks, then discarded them. I preferred them as it meant my body was still flat but angled by the bed.
I may be different to many in that I didn't have any acid reflux either before or after surgery.
I found sleep hard for the first ten weeks, since I like to sleep in my side and due to the surgery coukdn't do it at first. Quite suddenly around ten weeks I could tolerate sleeping on my side again. I dud then and still do occasionally now use a spare pillow to rest my tummy/scar against, as in the early days it felt like my tummy was sagging over.
I guess you need to find what works for you, ideally without spending a fortune in doing so.
Just rest assured everything gets easier the further past surgery you go.
Hello Malcolm, I am a chiropractor who has Achalasia and has had an esophagectomy. You ask a great question and your comments are right on the mark. If the wedge is not long enough to extend below your hips, you are going to cause lower back and sacroiliac problems over time. Question for you, are you a back sleeper or a side sleeper? I slept in a zero gravity chair prior to the ectomy as I had to sleep in an almost erect position to avoid aspiration. Post ectomy the issue is no longer aspiration, but reflux if I am too flat. I sleep on a 14" wedge and that works for me. If I roll off it, I get some reflux. I much prefer side sleeping and also finally being in the same bed as my wife!
The best situation is raising the entire bed frame (blocks under the frame) or placing the wedge (full bed length) in between the mattress and the box spring. This would be too high for my wife, so I have chosen an on top of the mattress wedge that is fairly wide so I don't roll off of it frequently. I am actually working with a friend of mine who has a wedge company (contourliving.com/) to make a longer and higher wedge.
Another area to address is nutrition, specifically food choices and nutrients that can help dramatically with reflux. I cover all of this in a book I wrote called Living With Achalasia. See LivingWithAchalasia.org. It is a free download and I update it regularly. The issues of wedges and reflux are addressed in the book.
Finally, performing the right exercises will really help your back. Here are some simple exercises:
I am very interested in this debate. The OPA is raising funds in this, our 30th anniversary year, for various things, including for the provision of wedges and other support pillows. I'll follow this thread with interest. I don't think we'll be able to stretch to buying adjustable beds!
Personally I need 3-4 pillows and I can sleep on my back or on my left side but I toss and turn and find myself too low down or on my right side and that sometimes causes reflux. I am now 21 months post op.
I am very concerned at reading everything on this post -- nobody seems to appreciate or take seriously the issue of reflux.
Reflux is not about a nasty taste or burning in the throat it is about life or death.
If you put yourself in the position of suffering reflux sooner or later you will have an episode of inhalation into the lungs which is highly likely to progress to pneumonia.
We are particularly at risk with pneumonia given that we have incurred permanent lung impairment (due to the thoracotomy with deflation) also our immune response is compromised (due to loss of lymph nodes plus chemo) and most of us are getting on in years.
Quite apart from the issue of liability the OPA should promote best practice and not expend charitable donations on palliatives such as wedges which are inherently risky.
Cost is not an issue since a set of two bedhead blocks costs less than a wedge.
The significance of sleeping on a blocked bed is that wherever you end up and in whatever position,prone,foetal,etc on an inclined plane your stomach tube will always be sloping downwards keeping the fluid level below the pharynx.
Actually did not realise just how serious it could be; yes I realised that prolonged exposure to reflux could impact maybe on other things but not to that extent. Suppose my thought was the indication to me of having reflux is when I get the bad taste so to get rid of that I need to correct my torso angle so removing the opportunity for ingress into oesophegous.
Removeing the symptom by removing the casue but yes wholly agree that it would be very beneficial to go into the implications and complications of reflux and the where it can potentially lead to.
Thanks gutlesswonder for giving me more food for thought.
Hello gutlesswonder, I am wondering what height for the bed wedge you recommend?
Just adding a little bit about hurting butts! If you have been in a hospital bed for a long time you can lose muscle tone and flesh in all sorts of places. Having a bath can be very painful, or sitting down with no / the wrong sort of cushion. Gentle exercise and moving around again gradually sorts this out, plus seeing a physiotherapist of appropriate.
I use a number of pillows . Two softish ones either side of my knees to help stop me slipping .
Various behind me - a firm memory foam one a V shaped one behind it .The V shaped one helps stop the pillows behind me from slipping and is invaluable for supporting my head .I fold the apex of it ( the top V shape ) over towards my head and it's just right .
Any one able to post pics of their pillow arrangement ?
All you say is useful information. I am post op nearly 5 years now, and do have trouble sleeping sometimes. I sleep with 3 pillows but do sometimes slip down and then can have problems. But I have found that the problems are worse if I have eaten something later than normal, for me. If you eat late at night the food sits in your upper digestive system and then can come back up when you sleep. If you get the digestive system fired up late on, were it is expecting food then you get the attendant bile and acid problems. I have been adjusting my diet for over 4 years now and fine that if I eat my main meals early in the day, and certainly no later than 5pm then my nights are a lot better. When I give in to temptation, (as we all do at times) and try to 'be normal' and eat later at night then I do suffer. So I feel the only way is trial and error for you on first, what you eat, and secondly when you eat it. If you adjust these it sorts out a lot of the problems. Hope it helps
You could try and have a hot drink after your last meal. I usually have a decaf tea an hour or so after dinner which assists the meal I'd eaten earlier to move further down.
Also, I take 25mg amitriptyline a hour before bed which stops any guy spasms which could lead to reflux.
I am only 1 year post op. next month! The surgeon had my husband by a wedge pillow before we went home from Los Angeles to our home 4 hours away! I found myself climbing up the wedge pillow every night and so uncomfortable! This website gave me insight to buy an adjustable bed, vitamin B deficiencies, magnesium and have been taking 50,000 IU vitamin D3 again from this website. My surgeon also put me on the purple pill Nexium which my first prescription cost $200.00 U.S. now is available in the states over the counter! My husband and I sleep on a temrapedic cal king. His back does not hurt as much and I do not find myself trying to climb back up pillows and hated the wedge pillow. Best investment I have made in my health and owe it to this website nor would I have known! Have had probably 2 episodes of bad acid reflux at night since we bought the bed. Have had to adjust my bed, but as my life the gutless wonder is my Hero and take his advice. Life too short to mess with the pillows! Spent the last week at my girlfriends parents house in Los Angeles to help her out with her parents and spent the week on a couch climbing my self up the pillows. So nice to be back home to my adjustable bed! It's the small things in life that are wonderful! Most often sleepful in Morro Bay, California! Thank you God for my bed!!!!
I am 1 year post op. I & had the very same problems , i found a "V" Pillow" had was not very effective. After experimenting with various pillows, blocks under bed etc. All of which were unsatisfactory, I finally bit the bullet and purchased an adjustable bed. Very expensive, ( approx £2000 with the medical discount)' I considered that having undergone a life saving procedure, it was worth the investment. I can honestly say that it was one of the best decisions of my life, I cannot recommend it highly enough. If you can afford it and decide to do the same, ensure you get a bed that is adjustable at the bottom end as well as the head. This will stop you sliding down.
If you need any further information, or would like to speak please do not hesitate to contact me (mike.corkhill@manx.net)
Take care and best wishes for your continued recovery
Hi Malcolm I am two years post esophogectamy and as soon as I was diagnosed I ordered and bought an electric adjustable bed I had seen on the Internet firstly the cost was around £600 and let me tell you it was worth every penny it's a double with individual mattresses and individual lift mechanisms so the wife doesn't need to prop up with me lol ...If I don't use it I have the same affect you do with the foul taste regurgitating I sleep comfortably at about 40 degrees
Hi Malcolm for some reason my post was cut short but never mind I got my point over also if your interested I could ask the guy that makes the bed I bought if it would be ok to release his number on here as his beds are well made strong and best of all over half the price of any others I've seen
If you needed to contact me my email is graham.proudlock@humber.nhs.uk good luck for the future
A little off-topic, but timing of the day's last meal (mentioned above) is important. While I'm still on the post-op chemo (ten more gruelling days to go) I have to eat late at night, because the capecitabine must be taken after food. I'm therefore eating around 9pm, and it makes me feel restless and uncomfortable. On a doctor's advice, though, I got used to doing without supper (last meal about 6 to 7pm) soon after the operation, and it made life a lot easier. I'll be going back to that plan as soon as I finish the tablets - it really did make a big difference.
I got the double Adjustable Bed and got a nice head board looks like any other bed.
so helps, as some times I have to have it different hight. also great for reading in bed,
my wife at first did not like the Idea, but loves it to read or watch TV, I am 7years in this new life and still have surprise happenings. My hospital still look after me as if I am a new person.
Investing in an adjustable bed can be beneficial for you, even for those having back pains, GERD, acid reflux. Pilling up pillows can only get you temporary comfort so far. You'll only wake up sore the next morning because the pillows are already nowhere in place. Check out this informative blog I found about adjustable beds and CPAP machines. ultramatic.com.au/blog/
Just a comment to add here, I didn’t think I got reflux as no pain or problems, but I have 7 years on from the op been diagnosed with barretts. As gutless wonder says. Do not underestimate reflux, I have ended up in hospital with pneumonia from inhalation. Not a nice experience. And to be on the watch list again is not good. Take care
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