Reflux AFTER oesophogectomy??

I have resigned myself to the eventuality of having an oesophogectomy early next year after a few years postponing it as I have already had three surgeries..1-Myotomy; 2-Nissen; 3-Revision of the Nissen which had been done laparascopically but deemed too tight, so was revised using conventional surgery, but to no avail. I still struggle swallowing and have severe and painful reflux despite being on two PPIs twice and thrice daily. I actually take Morphine for the pain. My only apprehension is surrounding the reflux. Does it go away after the oesophogectomy or are we stuck with it for life?

[alexLS14]

Hi, I had oesophogectomy just over a year ago and was prescribed 'Lansoprazole' capsules. One to be taken every morning 30 minutes before food. I have never had any reflux problems since. 'Lansoprazole' reduces the amount of acid your stomach makes. Good luck. Alex.

[Hidden in reply to alexLS14]

Hi Alex..thanks for your reply. I am on Pantoprazole twice a day AND Ranitidine twice a day to no avail. I am just hoping the surgery will cure me of the controlling pain I get when acid burns me. Keeping fingers crossed! Thank you again.

[willow13]

Lansoprazole is the way forward. It definitely stops the acid forming in the first place. Good luck.

[Hidden in reply to willow13]

thanks willow....I was on Lansoprazole once but got up to the maximum permissable dose with no positive results and they eventually took me off it and put me on Omeprazole with pretty much the same results and then Esomaprazole again with no benefit before my consultant then put his arms up in the air and admitted defeat. But thanks anyways.

[willow13 in reply to Hidden]

Try extra strong gaviscon too available on prescription, it just may help my husband has both lanso. and gaviston

[Hidden in reply to willow13]

I did not know this was availble on prescription. I will ask my doctor. thanks for the advice.

[willow13 in reply to Hidden]

Yes my husband has three bottles a month and it all helps. Rubbish illness isn't it? Still he is not 16 months after surgery and doing quite well so can't complain at all!

[Hidden in reply to willow13]

Or perhaps it was bile reflux that PPI medication will not touch?

[2Chrissie4 in reply to Hidden]

I had an Ivor Lewis Oesophagectomy back in October 2004. I am on the maximum dosage of Esomeprazole and I am on Emozul 40mg twice a day though on a bad day I can take these Emozul up to 8 times a day. The head of the bed is up on blocks and I sleep with 5 pillows. On a bad night I can be violently sick with bile reflux as it burns my throat, back of my mouth in fact the whole of my mouth burns so much that I am ill and I have to get up to have a juicy drink to take the bile taste away and then try and get some sleep upright in an old armchair. The team looking after me tell me that I am already on the best medication and on the maximum dosage and that they cannot help me any further. The team looking after me consists of a specialist nutrition nurse because I use jejunal feeds overnight, a general surgeon specialising in upper gi surgery, a dietician and a gp. All tell me that nothing further can be done about it. I tell them that I still have my pylorus sphincter so really that can be tightened a bit to try control the reflux or they can rerout the bile duct to drain further down the small bowel. The surgeon is a specialst in this field and I am determined that either of these options are available because I am in a desperate situation now with me waking up several times a night and on up to five nights out of seven. Do you think that either tightening the pylorus valve or rerouting the drainage from the gallbladder to a position lower down the small bowel would be an option for me or is it a pipedream?

[SteveJ]

Hi Turnex

I had my oesophagectomy about 6 1/2 years ago and I still get reflux from time to time but if I do it's usually my own fault for eating the wrong thing or eating too much and too late at night. I know what causes reflux for me and sometimes I'm a bit naughty so then i have to pay the price for it. of course it could be different for you, you seem to have had a tougher time of things than me. Good luck with thing's anyway.

Kind Regards

Steve

[Hidden in reply to SteveJ]

Hi Steve. I wish I could say as much...I eat healthy..no fried food no fatty food no hot chilli or anything like that and yet I still get crippling painful attacks that come on in an instant with no warning. Hence the morphine syrup to combat these sudden attacks. thanks for your well wishes...I am praying all goes ok.

[Jusjust in reply to Hidden]

Hi Turnex

My husband is15 weeks post op and has had 2 bouts of indescribable cramping attacks over last few weeks of which the specialist have only eased pain then sent home. Eating no dairy has helped even thou unbearable to him. Also found that sickness after eating is eased by short walk and then reading or doing something to take mind of off pains. Also have brought massage tool hand held which when pains come on have been using in clockwise motion over tummy. This was worth it's weight in gold when husband cramped just before bed and we used this which eased pain and trapped wind, we have also realised that using Ora-morph was causing its own issues. Was up to 60mm a day then sometimes only 5-10mg a day. When reading up on this. Withdrawal from morphine causes symptoms and especially cramping in tummy regardless of eating or drinking. Hospital have now advised to ween him of off morphine over next few weeks which will help with cramping pains. And rather than take it daily in such amounts . Take 5mg as and when . Hope this helps.

[Pat1946]

Hi I am 8 years post op I did not get reflux until about 6months

After op but I take lansoprazole 15mg each twice a day keeps relux at bay I get reflux very occasionlly when I eaten a hot curry or anything with garlic bast of luck hope it all works out for you

Regards Paul

[Hidden in reply to Pat1946]

thanks Paul...really appreciate all the well wishes on here.

[handy]

I think everyone is different when it comes to reflux/bile , I am 4years post op and taken everything there is to help including a very expensive bed but I still get it very bad sometimes .

[Hidden in reply to handy]

I am sorry to hear you are still suffering. I hope I am not going to be the same.

[strangetimes]

Turnex that sounds very hard .

Are your doctors recommending an esophagectomy ? As I'm sure youknow it's a big operation and there are side effects from the re -plumbing of ones digestive system .

Yours sounds like a very unusual case ,have you considered asking for a second opinion ? Maybe one of the hospitals like St Thomas's in London that specialise in this field ?

I do feel for you ,it sounds as though you've been through so much and are still suffering .

[Hidden in reply to strangetimes]

I am actually following the advice of Mr Mason and Mr Gossage AT St Thomas' as a second opinion after my surgeon at colchester general felt he had exhausted his expertise and failed. lol. It is for this very fact that it is a major surgery that I have been postponing it for the past three years but am at a stage now where I am struggling to swallow even though my gullet is quite dilated it is now a saggy tube and trapping food. I REALLY really am struggling. thanks for the well wishes.

[gutlesswonder]

It's so difficult to project one's own experiences onto anyone else-- if this website proves anything it is that we are all completely individual .

Commonsense would indicate that if you replace a large expandable balloon (the stomach) with a thin tube (the re-fashioned and pulled up pseudo-oesophagus) then you are going to experience problems of capacity --filling it up (eating and drinking) and the tendency for chyme (the mixture of semi-digested food and acid/enzymes ) to come back up.Obviously if you squeeze or constrict this relatively small reservoir then the problem is exacerbated.

So posture is perhaps the greatest single factor.

Also it is worth remembering that reflux discomfort may have little to do with acid per se ;in many instances the culprit is bile leaking back through the modified/re-positioned pyloric sphincter.

In my case (22 years post Ivor Lewis op) a cholecystectomy (removal of gall bladder) made this far worse.

Thanks be I've had all that time to get used to the idea that my gorgeous Mexican wife still expects me to have a portion of chillies on the side with my cornflakes !

[Hidden in reply to gutlesswonder]

Thanks for the informative and helpful reply. I think being between a rock and hard place I am taking the plunge and just hoping for a positive outcome and as I mentioned in another post above...i have postponed this surgery for three to four years now and have no option but to go ahead with it. mentally I have been in denial and I just have to overcome this final hurdle and I will be on the home run. I will pass on the chilli with cornflakes as I still recoil at the thought of brandy and cornflakes ( as I used to see my friend's alcoholic mum indulge in when I was still a teenager ).

[Nic02purple]

My husband, 10 months post op only gets reflux if he eats spicy curry. Wishing you all the best.

[Hidden in reply to Nic02purple]

thank you

[gutlesswonder]

You have certainly been through the mill.What you are contemplating is pretty drastic.

Are you taking this step on account of the reflux alone ?

Presumably you have been scoped --what does the gastroscope reveal -- do you have signs of Barrett's ?

[I will completely understand if you aren't comfortable going into this detail ]

[Hidden in reply to gutlesswonder]

Put it this way...if I had a Loyalty card and swiped everytime I have been scoped I would have a room full of toasters by now!!! The last Manometry, september 2013, revealed NO peristaltic motion whatsoever despite my gullet being fully dilated but me having severe swallowing difficulty and regurgitating food and acid..sometimes painfully into my lungs when I am asleep...on three pillows..virtually sitting upright in bed too! The pain from the reflux rules my life...I do NOT go anywhere without a bottle or water to wash it back with a few gulps in the event of a sudden attack. There are days when it is so bad I am showering AND swigging gulps of water from a bottle in between..there is a water bottle even in the loo just in case. There are times it has been moved and I am peeing and I get a sudden attack and I have to stop and dash to the kitchen for a few deep swigs of water! its really controlling my life in a negative way. I cannot begin to explain the nervous apprehension I get at customs control when I have to part company with my water botttle whilst in the queue to get past the scanners etc...they are the longest worrying minutes of my life and I buy a bottle as soon as I am the other side! I am personally at the end of my tether with both the pain from reflux, regurgitation, swallowing difficulties ( I have had a sudden attack and had to get up to gulp water whilst typing the preceding sentence) and this is the life I lead daily!

[Hidden]

Don't forget that achalasia is different, and that the underlying problem is to do with the mechanism that propels (or does not propel) food through the system. An oesophagectomy may well very often take away the lower oesophageal sphincter, the valve in between your oesophagus and the stomach that is meant to stop acid reflux coming up. Is your reflux acid, or is it bile (an alkali)? The PPI medication will not affect the bile, so you may need a different medication for this.

Having an oesophagectomy is a last resort, but can be a solution for some people. It will not improve reflux, but most people can generally control reflux and keep it to acceptable levels by medication and posture at night, but they never had the problems to the same degree as you have in the first place.

Most people who have had oesophagectomies have had the surgery because of cancer, and there has not therefore been much choice about it for them.

I suspect that you are faced with the prospect of undergoing surgery that has a certain % chance of reducing the severity of your problems rather than restoring your digestive system to what most people would regard as normal.

The surgeon at Colchester was quite right - and you are being looked after by very experienced people at St Thomas'

[Hidden in reply to Hidden]

thank you for your kind reply.

[strangetimes]

Golly turnex ,what a time you've had of it .

Mr Mason and Mr Gossage ( special round of applause for Mr Gossage ) are certainly the A team . And if you are having the op at St Thomas's you will be in really good hands .

Everyone from the anesthetist to the food trolley people are lovely . And the nurses are beyond fantastic . And Orla one of the dieticians ( i expect she's the head ) is the bees knees . If you want any details about the op - tho might be different for you I know - do ask .

[Hidden in reply to strangetimes]

will do. I guess you were under their care too right?

[strangetimes]

yes ,Mason and Davies operated and Mr Gossage saw me a couple of times on the ward .

[gutlesswonder]

Do you have a record of the manometry after the first procedure for myotomy ? If at that stage you were already experiencing significant achalasia then an Heller wrap may have been ill-advised.A partial fundoplication as in Dor or Toupet could have had a better outcome.

It is even more unfortunate that the complete wrap was done too tight and had to be corrected.

Spilt milk -- unless you have a good Solicitor.

How old are you and how fit ?

Have Tommie's opined on the condition of your stomach after the three procedures--particularly the two Heller ?

If your stomach still has good motility then my completely uninformed hunch is that converting it into a pseudo-esophagus can only improve your situation.

Get them to brief you in detail about cervical anastomosis --this will be the junction between the pulled up stomach tube and the short stump remaining of your old oesophagus; this can cause problems.

What we 'eosophagectomyts' endure is not as bad as what you are experiencing and on balance is more manageable.

Since you have not had cancer and therefore have not needed removal of lymph glands you will have avoided much if not all of the collateral nerve damage which afflicts us.Consequently you could emerge in better shape than us.

Go for it.

[Hidden in reply to gutlesswonder]

I do not have any records at all but I presented with both Achalasia AND severe Reflux when I first sought treatment and the first surgery was the Myotomy followed by the keyhole Nissen to try and minimise the reflux but was told by Mr Mason that being done keyhole meant it was difficult to ensure it was not too tight hence the revision in 2007.

I will do as you say at my next appointment in Dec but I have more or less made up my mind to go ahead with it. I spent a miserable 4 hours at work today gulping water after having taken 120mg morphine and 90mg codeine and 1500mg paracetamol plus a few sips of oramorph to no avail as the burning persisted...I am still in mild pain now as I type this even though I have taken my nightly dose of morphine and pain meds as well as PPIs. To put it in a nutshell...I have had enough of the pain!

thank you as always for your kind and informative input

[Hidden]

Some people do maintain a relatively good quality of life after having their oesophagus and stomach removed as well, but surgeons never want to remove things unless it really is necessary, and there may well be implications for the nerve system that drives the whole process of swallowing and digestion. It is definitely a high level judgement by the top people about the balance of benefits you might gain.