I am a 14 yr. survivor of EC and had the open Ivor Lewis surgery done in 2009. Over the years I have had to have an EGD for "stretching" purposes when my throat tightened up from the scar tissue that the surgery had caused. This helped a great deal. It wasn't until recently, maybe the past 5 years or so, that the doctor would also stretch the pyloric as well while he was in there.
The doctor mentioned to me that several people who have had EC surgery would go on to get a procedure known as the G-Poem to relieve the problems in which they were having. I asked what the problems were that they were having and he said nausea, throwing up - etc. I told him that I didn't have any of those problems (I was wondering why he was even mentioning this procedure to me at this time).
So, years passed and then I started throwing up - at first it was once in a months time and then it started more frequently and I was throwing up food that I had eaten the previous day or the day before. It was awful because it wasn't like normally throwing up but more like choking, gagging (sorry for the unpleasant description). Time went by and then I started throwing up daily for 5 days straight. This got me to go see my GI (I was non-weight bearing and not in very good shape after a surgery at the time in case anyone is wondering why I didn't go in immediately).
This was back in June (2023) and since then I have had 3 EGD's. The 1st two were pretty much a bust because he had a hard time being able to see anything and getting the scope through to the pyloric because there was so much debris (food) in the way. The 2nd time he went down in July he was able to do a little better, still debris, but he was able to stretch it some. He said it was a pin hole and no wonder no food was getting through. He said there was so much swelling around the pyloric and he couldn't have gone further than he did without making it bleed. He got it to about 10. I am not sure what measurement the 10 is but I do know that my other GI has gotten from 15 to 18 and then one time from 18 to 20 which 20 he said was the max that they can go. So, granted 10 is not large enough.
At this point he ordered an EUS to be done (which is an ultra sound wherein they can take a lot more biopsies deeper into the tissue then they can during an EGD). So, that procedure was done this past Friday and I am waiting on the biopsies. The same day I also had an EGD (they were back to back) for another attempted stretch after being on a strict liquid only diet for 2 days previously and the doc was able to stretch it to 15! That part is good but he is concerned about the fact that I had had an EGD in Oct. 2022 and just 8 months later it closed up - that should not happen.
So, the plan is to wait on the biopsies to come back to see if they give them any info. on why all this inflammation is happening and then I am set to go back in a week for him to see if he can stretch it more - he didn't want to do it all at once or it might start bleeding as it did the very 1st attempt.
Of course - many prayers are going on in my head that the big C is not going to show up anywhere on any biopsies. It just can't!!
When I asked the doc who did the EUS his opinion on how I originally got this pyloric stenosis problem (because I always thought it stemmed from the EC surgery since they re-wired our systems internally) he said: "if not from the surgery itself it is probably from the radiation you had". I hadn't thought about the radiation factor and the GI I used to go to had never mentioned that. My old GI just used to say that he has seen problems with the pyloric in a lot in people who have had an esophagectomy.
I put pyloric stenosis in the search bar above but the only thing that came up was people who had it as babies since normally that is the course of this but with us having had the "operation" we are now wired differently and that causes the pyloric to do what it is doing to me - apparently.
I am wondering if there is anyone out there who has experienced anything close to what is happening here. I was just surprised that nothing came up when I searched for it. I can't be the only one who has had this pyloric problem... or can I? 😁
Anything you have to contribute to my story would be so much appreciated.
I apologize for the length but I wanted to let everyone know exactly what was going on and leaving no holes in the story so you would all be better informed about what it is I am going through and hopefully have some input as to this awful thing that is happening.
I hope everyone is doing well and I hope to hear from you!
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lightsinthecity
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Hello. You are not alone, although you do seem to be having a tougher time than me. I asked a similar question a few years ago on this site and got supportive replies from others in the same situation and I am now about 5 years further on.
On the whole they call it delayed gastric emptying after surgery or sometimes satiety. If you google oesophagectmy and gastric emptying you will see that it occurs in up to 39% of us.
I had my surgery for benign reasons so we may be different. But, the surgeon told me that over the years they have learned that this is a potential longer term complication of oesophagectomy and is mainly due to the body ageing. Just like things start to sag on the outside so they also sag on the inside and things just move a little bit. So, function can be compromised. I am sure the explanation has been simplified but I quite liked it as it helped me process what was happening.
I went through a load of dilatations and they wouldn’t dilate over 10 due to the risks, but just like you they wouldn’t last long. In the end the surgeon suggested I saw a gastroenterologist as he suggested they are experts in physiology. He referred me to a doctor who was very experienced in altered anatomy (as he worked in the same centre as the surgeon). The gastroenterologist knew right away what needed to be done and said he had seen this many many times.
After a load of tests he came to the view that the surgery and time had slowed down my whole gut and it was causing a delay in gastric emptying and bacterial overgrowth. So he prescribed an initial course of antibiotics and more importantly a drug to boost motility. I have been considerably better and not had a dilatation for about 4.5 years. Its not quite back to normal but if it is partly due to ageing then I understand why. But if I manage my day and food intake appropriately it doesn’t cause me much of an issue and doesn’t seem to be getting any worse.
I am now on a yearly check-up. I sometimes wish it was all perfect and can bet a bit miserable about it, but on the whole I am ok with it all.
So my advice is to make sure you have the input of a physician who understands altered anatomy.
I did google esophagectomy & gastric emptying and the article was very informative. I did have a similar problem a few years back and although I had EGD after EGD it wasn't until I read about the drug Domperidone and a post of how it practically saved someone's sons life (who had the same circumstances that we all do) so I thought I would give it a try. The drug has been banned in the U.S. (you can google it for explanation) but you can get it from Canada and at the point I was at that is exactly what I did. It did seem to help and I took it for awhile until I started feeling better, gaining weight back, etc. During that bout of DGE there was no throwing up or anything - just extreme nausea - but, that was another story - sorry, getting off track.
I guess you and I are in that 39% range - unfortunately.
I too like the explanation given to you by your surgeon. I mentioned that not too long ago - that it may be due to aging cuz it sure seems everything else is...
So, you said that your doc. prescribed an initial course of antibiotics and a drug to boost motility - what was that drug? I am very curious because that is exactly what Domperidone does but I know that there are many others that do the same thing.
The GI I used to go to kept trying to get me to get a G-Poem procedure because he said that a lot of people who have had an esophagectomy end up getting that to avoid the side effects of vomiting and nausea (the only surgeon in the hospital who did them was in his "group" so whether or not that was part of the reason I will never know). This took place years and years ago and I told him that I have never had either of those side effects so why would I get something like that? As a matter of fact, now that I have had those side effects, or at least one of them - the vomiting - the G-Poem has been mentioned to me as a possible solution to this problem. I much rather go the route of what your surgeon told you and the path that you ended up taking because of his advice and look at you go now!!!
To me the G-Poem is just another "permanent" change to my anatomy and I feel I have had enough changed internally already and I would prefer not to change anything else. During this G-Poem procedure they cut the muscle of the pyloric so that food can go through instead of getting stuck. That sounds good but what about adverse affects? I have researched it and since it is relatively new (2013) there are some things they still don't know about it (another reason I don't want that to be the answer to what is going on with me now).
I am glad to hear that you haven't had a dilation in 4 1/2 years - that is great! Also glad to hear that things are currently stable for you and not getting worse... also great news
I wish you all the best and, again, I thank you for your helpful reply.
Hello. The antibiotics were fabulous as they gave me total relief. We have since repeated them and I didn’t get the same effect. No real explanation. But the motility drug is Prucalopride. It has made quite a dramatic difference but being a relatively new drug I don’t think there is a lot of information on long term consequences. But, like you, for now I prefer this to a surgical option. Surgery is a bit challenging for me as the whole reason I had the oesophagectomy was for a life long problem with upper motility so I have had a long history of being stretched and surgery (Heller Myotomy - same as the Poem but through the abdomen rather than an endoscope) prior to the oesophagectomy.
Every now and again I have a liquid/soup day just to give my digestive system a bit of a day off and I have found that also helps. I have also found that drinking a lot of fluids In between eating helps.
I should add (just in case someone else similar to me is reading this prior to surgery) that whilst I now have the same symptoms as before the surgery it is a different sphincter causing me problems now. Prior to surgery it was the cardiac sphincter, it is now the pylorus. This one is much much easier. The oesophagectomy was a revalation and I have no regrets.
Hi I am interested to read your post, I had the same open op in 2009 and had lots of problems with motility in the beginning. It then settled down but I have found that my stomach (not that I have much more than the valve ) doesn't empty quickly. After a failed endoscopy, I had been on a clear liquid diet for 72 hours before but they complained I had food in the way. I didn't have any radiation, just the two courses of Chemo, before and after the op.
Thank you for replying to my post. I am not sure how you are doing now as your description of things is a bit vague.
It sounds like most of your motility problems were right after your surgery in 2009? You mentioned you were on a clear liquid diet for 72 hours but that there was poor visual due to food debris but you didn't mention what was done afterward? Did you get another EGD? Did they mention getting an EUS to take more biopsies?
that was at my last Endoscopy. I developed Barratts 5 years after the op and have 2-3 yearly checks. I have had poor motility ever since the op in 2009, but lately have been getting a lot of dumping if I eat anything and feeling very full all the time. I was interested in the fact that they had done a stretch and that scar tissue had caused your problem. Stay well Lizzy
After my esophageal cancer Ivor Lewis , I couldn’t eat for about 6 months without throwing up. Then they did a gastroporesis test and said my pylorus was the size of a coffee stirrer straw. Then had a gpoem done and still had problems. Went in for a scope without having eaten any solids for two weeks. Still had food in my stomach. So they did a stretch. I kept eating soft food s . Finally I got to where I could eat a little and Lee it down. Then after about 4 years I was doing very well and was cancer free , eating small portions. Then in year 5 I started having lower intestines cramping and constipation. CT said I had diverticulitis. That’s where I’m at now.
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