My name is bob,I'm from Shropshie area and had my full oesophagectomy and a third of my stomach removed at the queen Elizabeth hospital on November 14 2016 since then I've experienced two major problems, sleeping , which is my mane one and acid reflux, my operation took 10 hrs where I was cut from corner to corner through my ribs to deflate my lung , I've been on morphene since operation since weaning off the morphene I still have pain across the scar in places has anyone going through the same pain as me 3 and a half months on .
Also how does everyone sleep ?
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Bobwhat1
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I presume you've been told you have to sleep propped up to avoid reflux at night? There are many of ways to do that, I like lot's of pillows round me like a nest. Some people like the electric adjustable beds etc.
But if you've got that sorted, what is it keeping you awake? Is it you just need to lie flat to be really comfortable? If it's that, well, I had the same op. 7 years ago and just look at the time I'm writing this!!! I think lot's of us find it difficult to get really comfortable propped up. But at least we're still here to complain.
If it's the pain keeping you awake, perhaps your GP could give you codeine or something to help. I think it's the severed rib's that ache a lot afterwards, but it improves with time. If it's really bad, ring the specialist nurse for advise. You are only a few months post op. and it takes up to a year to recover.
It does get easier with time - I had similar surgery in February 2006 and I had lots of extra pillows and still have a few more than most. The pain lessens with time. The first 6 months are the toughest and it does get better.
Hi,you do need to sleep in an elevated position,I am 7 years post op and still need to sleep slightly elevated,we purchased an electric bed from Dreams it was expensive but very worthwhile,if you tell the retailer that you are buying for medical purposes and are prepared to self certify you will not have to pay VAT,so that's 20% off for a start. Regards slight pain and discomfort around the back and ribs I think this is quite normal,I still feel slight aches and pains,but reconcile these by just being able to enjoy every new day.Just off to play 18holes of golf at Felixstowe,so life can,t be too bad.
The pain can be the worst aspect early on but getting the right painkillers and right bed or position at least will help, as mentioned by others. Take it very easy. Lifting heavy things on that side will set you back. You've had major surgery. A year and a bit on I still know I've had it done if I overdo it. The only thing I'd add is I purchased a small electric heated pad about 12 inches square which I'd wrap around that side of me for some relief. It's by 'Dreamland' and I think I got it in Argos.
Hi Bob, as most others will,testify sleeping is a challenge for many and getting comfortable is not easy. I had my op 7 years ago and have tried various methods to help, the most effective being a memory foam V shaped pillow. Whilst it was about 30 pounds it was a good investment. I use a pillow behind it, then the V shape pillow with another pillow on each leg of the V and another one on the top. This means I cannot move and am supported on all sides. I still get aching pains from the scars and expect to have them given the severity of the cuts made across major muscles. I am fairly local at Hereford so if you wanted to meet up let me know. Hope you feel better soon, it is a long road but the alternative doesn't appeal to me. Best regards. Ray
Hi Ray I have tried a v pillow but I can't seem to get them right I'm always sliding down the bed too .... Is there anyway you would be able to take a photo to show how I should be putting the pillows please? No worries if not
Hi, most people sleep propped up. I sleep with 3 pillows and a triangular one. The only position is really on your back. I am a year post op on the 15th. Still get pain across scar. I have Lansoprazole twice daily and Gaviscon before bed. Still get the odd reflux. I would get off the morphaine as this prob doesn't' help sleep. I used the app Headspace on my iPad, to help both my husband and i relax at bedtime. It is also good breathing exercises. We used to drift off before the session finished. It takes along time for the new plumbing to work properly and it does get easier.
Also eat no later than 7pm or if you have to have a little snack later on.
Thank you everyone for your well appreciated answers , looks like plenty of pillows for me, I had kemo before the operation but wasn't able to have kemo after , my body wasn't fit enough, they said my scan was all clear , has everyone had kemo after operation?
To the extent that relaxation is an important issue, you can try and get into a better mood for sleeping.
Reflux can be partly dealt with by sleeping position and keeping Gaviscon handy by the bedside. Sleeping on your left side can make things easier for some.
The discomfort from scar tissue / after-effects of surgery is a real pain. Sometimes you just cannot get comfortable for long enough, and it is not unusual to spend all or part of the night in a recliner chair. Gentle progressive exercise and physiotherapy can help.
Night time is also when you can start to brood a bit about all you have been through. This is quite natural, and quite a lot of patients and carers do go along for a session or two with trained counsellors at a cancer centre. People do find it surprisingly helpful even when they do not expect to.
You are at a stage when these post-surgery pains often gradually get better, but a lot of people do get surprised by how long they have lasted. To that extent it is quite normal, and not any kind of indication that the cancer was not successfully removed.
Analgesia, stop the morphine! Surgical pain is obviously to be expected after such a major surgery. Opiates such as morphine are well known to cause sleep disturbance, although others like codine can have the added benefit of drowsiness, they may cause constipation. Not something you want on top of reflux, sleep disturbances and pain.
Your doctor should be able to provide you with a suitable PPI for the reflux. It is worth discussing the benefits of synthetic opiates with your doctor, or alternative pain medications. Long term use of morphine exclusively is not appropriate pain management 3 months post op.
I understand the recovery process is long and trying, wishing you the best in finding some relief and an appropriate management plan.
I had the same op as you although my was done keyhole 2 1/2 years ago (at the Q.E) I sleep propped up with pillows on my back, it was uncomfortable at first but now I have got used to sleeping that way, I am on morphene also, but only for the last 18 months or so, as I have developed pain in whats left of my stomach when I eat, but I have now been prescribed domperidone for that. As to the sleeping, I tried a v pillow to start of with but I find sleeping propped up on three pillows helps. Its just a case of trial and error to see what suits you. It does get better after a while
Hi Bob, I will be 4 years post op on March 9th and must be the exception, because I'm back to normal now just sleeping on one pilllow. However that wasn't how it was just after the op, I spent at least two months sleeping in a reclining chair basically it was the only way I could get comfortable and guarentee a good nights sleep. As for recovery I think it's fair to say times a great healer. All the best to you
All of Alan's comments are very apt. Also you might try the Contour Black Max. It's available online (a bit dear at approximately 125 euros) and is a 3-piece folding piece of foam which is a wedge pillow and another piece which elevates the knees somewhat to keep the butt in place. I had to use it because I kept sliding down flat in the bed with a wedge pillow. The good news is I didn't need it anymore after about 8 months and could sleep with just the slight elevation of the head provided by a doubled pillow--could even sleep on my side. I am now 18 months past the operation and feel great. Best of luck. Worth
I think everyone has answered the sleeping query (I personally haven't mastered the sleeping position yet) and acid reflux (my upper GI surgeon advised 2 by 20mg or 1 by 40mg esomeprazole (24 hour antacid) at around 8-8.30 (I go to sleep around 10-10.30) which works better than the lansoperazole for me (you have to remember to take it with meals). You might want to try and experiment and see what works best for you.
As for the rib pain (I am 2 months ahead of you in terms of post operative) I found the best solution was to go to physiotherapy to mobilise the upper thoracic spine (1 simple exercise is to stand with feet apart and swing arms whilst held horizontally back and turn head at the same time so you can see what's behind you - at least 10 on each side). After a couple months of this and a few other exercises together with some manipulation by the physio I am practically pain free - I am 6 months post op). If I feel a bit of an ache there I just do my exercises and by the next day it's better. I also had intense agonising pain in my diaphragm at the front which has also gone again largely due to exercise and I now do pilates twice a week which has improved it further and I only notice it on the odd movement. The other helpful thing is to buy wheaty bags on Amazon you can heat up in the microwave and bend around the ribs - the relief lasts around 20-30 minutes or so and then just reheat.
Morphine is awful as it interferes with your sleep and makes me personally feel hyper alert so best to get off it asap. Having said that I do take a sedative at night which helps tremendously but then I was an insomniac before the cancer and would only be a short term solution perhaps just to help you get over the worst but I wouldn't pursue that unless you have trouble falling asleep. There are also some good meditation apps to help relax such as headspace and calm which don't make me sleep but do help you to relax and the tension in your body does not help the pain.
I hope you feel better soon as I am sure you will and despite having ongoing swallowing and digestive issues I even managed to go skiing at 5 months post-operative which I never would have thought possible. Exercise is the key to pain management and if you can't go to the physio there are a lot of online videos to mobilise the upper back.
Hi I have an inflatable wedge system (unused) that I am giving away if anyone wants to try. It was too expensive to send back to USA so I am asking only for cost of postage. I live in Hertfordshire
Hi Bob my husband is 2yrs postoperative and has been suffering with pain across his ribs and mid section since the operation, he has tried most medication and even had nerve injection in his spine to kill the nerves in the L6 section. He has just started taking pre gabaline about 6weeks ago, gradually increasing the dose and I have to say that they are probably the best medication he's taken, in just 6 weeks he looks better in self and the pain is at last subsiding 😀😀 he still gets the bile but it's not all the time, we bought an electric bed which has been worth every penny and would highly recommend, life does get better with time probably the first 6 months are the worst and at times it has been a real struggle but keep going Bob your still alive and that's all that matters 😊
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best regards Ray 
Operation Eve
Life after achalasia
OPERATION IS NEAR..OESOPHAGEAL SQUAMOUSAL CARCINOMA
