Ivor Lewis Pain and Nausea Years after

First, what a blessing this site is. I'm still working through all the posts so apologies if this topic has been covered in a post I haven't got to yet.

TL;DR - Pain/Nausea never went away post-surgery & Radio Frequency Ablations were effective for 3 years but then stopped providing relief.

My wife (34yrs old) had the Ivor Lewis surgery in 2010 to remove a benign tumor. Since then, she has suffered from extreme pain and nausea and we can't seem to figure out what is causing it. She is prescribed Gabapentin, Cymbalta (swapped from Amitriptyline) and Omeprazole. We eat very healthy, she sleeps propped up, and we've seen every doctor/specialist we can get our hands on. The pain episodes happen more often late at night/early am than any other time.

The interesting part is that she was getting Radio Frequency Ablations (burns nerve endings) for three years and during that time she was completely off opiates, mostly pain free, was very active, ran half-marathons, and we thought things were turning around. In the beginning the RFA would bring relief for 6-8 months but over time the relief dwindled down to 4 months, then two months, until eventually the RFA procedure did absolutely nothing. That was two years ago and since then we haven't been able to get the pain under control. Pain episodes include a lot of retching, nausea, and loud moaning.

We have experimented with CBD, Medical Marijuana, Calmare, Nerve blocks, Spine implant trial but nothing seems to help except strong opiates (which is not acceptable to us). Marijuana can relieve the pain and nausea sometimes but the pain episodes that follow usually require ER visits (10/10). Without marijuana, the pain episodes are more frequent (almost daily) but peak at 7-8/10. Currently, she is on a hiatus of marijuana to rule out cannabinoid hyperemesis as being a trigger. Recently we tried nerve blocks but she said the pain was coming from a deeper location than the nerve block was covering. The pain seems to come from her sternum area and she describes it as dull (not sharp), achy and intense.

I'm hoping someone else has an answer to this. It's got me baffled and it's exhausting.

16 Replies

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  • I was 32 when had the surgery almost 10 years ago, though I was stage 3. I do occasionally get pain, especially if it is cold or if I eat too much.

    Sorry, I do not know why she is still in pain,

    Aoife

  • I had a Transchiatal Oesophagectomy in 2014. SO now have no oesophagus and only 25% of my stomach left.

    Omeprazole caused me to have very bad nausea. I stopped taking it and the nausea stopped within 48 hours. I also have had few problems with Acid Reflux since stopping taking Omeprazole. I do have to make sure that I do not eat after 19:00, or the reflux can return.

    I suffer from severe back pain, under my left shoulder blade. This travels around to my lower front rib-cage, when I walk. I treat this with pain killers. Surgeons, doctors, medics etc cannot find the cause and I have undergone several CT scans and some lumbar epidural spinal injections into my spinal nerves to try and cure it. The injections worked for a limited time only. But they did work, at the time, and that says to me that they were effective, just not long term.

    Eating affects the pain. It sounds silly - but it's true. If I don't eat then the pain recedes to a background ache. If I eat, even tiny amounts, it is always there. I just live with it now and have adapted to it. I could sense that my medical team were getting fed up with me moaning about it (so was I).

    There are others on here who also have the same or very similar pain.

    Good luck.

    Bruce

  • Thanks. I will keep a food diary to see if I can find a pattern or anything that causes less pain.

  • Do have a try not using the Omeprazole for 48 hours. Maybe take some Gaviscon immediately before bed.

    That works well for me. But for sure the biggest single improvement in all of my wonky quirks after surgery was adapting my diet via trial & error.

    I did ask my surgeon "just how big is my stomach now" his answer was "tiny" smaller than the palm of my hand (and I have very small hands). Add to this the fact that it is somewhat confined in it's new home in the chest, any bloating/swelling/stretching, will cause discomfort. Armed with his knowledge, I still manage to get it wrong most of the time by over eating or drinking too much with a meal.

    Some particular foods are really bad for me. Salmon being one of the worst. Great to eat, it goes down a treat but hen seems to swell up and block my stomach, to the point it feels like somebody is standing on my chest. Instant relief is available by sticking my fingers down my throat (not at the dinner table).

  • Thanks I'll watch the portions. Sometimes back to the basics is the best answer

  • We're actually on Pantaprazole now and I just ordered Gaviscon. I had never heard of it until this site. Thanks! I'm also keeping a close eye on food portions as it seems most pain related posts mention food.

  • I think any answer is going to be speculation that should be taken with a very large pinch of salt, but here goes:

    If she has always had pain from the surgery, does it seem to be emanating from the site of the surgical scars inside? When the surgeon has explored and moved the flesh around during examinations, does this create a sudden worsening? It seems a long time after the surgery for this to be the case, and one possibility might have been some form of adhesion after the surgery, or unresolved nerve damage. But all the exercise and running since the original surgery makes this unlikely.

    Are her toilet habits normal? If her stools are regular and a good consistency, then it might tend to make a digestive tract problem like small intestine bacterial overgrowth and colic less likely, and in any event the pain seems to be coming from higher up. But is the nausea caused by the pain, or is it something separate? If the nausea is to do with her stomach not emptying properly, then that might point towards a digestive solution.

    Does the pain follow at a certain interval after taking food? (In which case it might be related to stimulation of a certain section of the remaining Upper GI tract).

    A systematic review of medication might prove or rule out some form of peculiar side effect from drugs.

    I am slightly puzzled by the radio frequency ablation. Was this to cure the pain, or was there another issue as well (eg dysplastic Barrett's Oesophagus?).

    You have obviously run through a wide variety of specialists, and pain can get transferred from other parts of the body through the nerve system, but my completely unqualified inclination would be to check the digestion process first. If the muscles and the swallowing process / motility is working OK with food and drink and toilet habits, then that side might well be OK.

    Try a test for whether any reflux is within normal bounds of acid / alkali in case it is an extreme reaction to stomach acid or bile.

    My guess is that an (or yet another) endoscopy and barium swallow test would help to some extent.

    Then there might be some form of nerve injury / problem in or around what would normally be the lower oesophageal sphincter, which your wife won't have any more, but is probably around the re-shaped 'stomach' in her chest. I have no idea whether this is even possible, but if her oesophagus were intact you could have a manometry test and see whether there is some form of extreme pressure created by the peristaltic muscles that might be creating some form of painful spasm - a kind of achalasia spasm, perhaps? The fact that marijuana has had an effect makes me think of achalasia spasms. And perhaps there is some form of effect on the nerve cells / cholinergic neurons affecting the muscles? Perhaps it might be to do with blood flow (some people with achalasia contemplate Viagra-type medication)

    Does eating banana, or having something soft and soothing to eat have an effect? Or warm water? Have you tried Buscopan? Does it get worse with stress / tension? Does relaxation therapy etc make any difference?

    Could it be related to some food getting stuck because of its texture?

    Do you know the original underlying cause of the original benign tumour?

    But really, be warned that all this is speculation. I think it needs an experienced Upper GI surgeon, perhaps one interested in oesophageal spasms and motility, to work this through, and perhaps a neurologist. There will come a time when it might be worth thinking about going on to a feeding tube for a period to see whether a complete rest of the system might make a difference. And there may be certain sports of scans that might help pinpoint the problem.

    That was a long way of saying 'I don't know'!

  • Thanks for such a long response!

    Nausea usually comes before pain. The RFA was for the pain. It's unbearable. She has a high pain tolerance and can retch and wait for hours before going to the ER (before I usually make her go). The pain does seem to be from where the scar is located. We've been told her stomach is higher than normal Ivor Lewis. Nerve damage is what we've thought because the RFA worked but we've been told the nerves can grow back in odd ways over time as a Darwinian survival method. We have seen a neurologist and just recently had an endoscopy and everything looks good. It's definitely something odd because she was on a fentanyl patch for 1.5 years and she chose to get off it and had a 5 week period of relativity no pain.

    She does have slow gastric emptying. Banana and other foods don't seem to change anything. I will have to check for buscopan because we've been through so many I'm not sure. The spasm theory seems interesting to me. I'll look into that some more. They said the tumor could have been there her whole life and just finally grew to that size so they're unsure of its origin. Hot showers help if she's smoking weed and has a pain episode but when she's not smoking they don't help. Stress and relaxation don't seem to be factors either. We can be at a party with friends (both sober of course) and it will hit.

    I'm going to dissect and research your post some more. Lots of stuff to look through. Thanks again!

  • Further, the pain is never sensitive to touch from the doctor during pain episodes. I'm going to ask about Buscopan, Alchasia, and a Manometry test at our never PCP visit. I do remember the other day she vomited food that she had eaten a day or two ago so the digestive track is something I'll explore further because it does seem like food is getting stuck.

    To expand on what I wrote earlier about the RFA. It was a procedure recommended by the pain specialist. It's a robot arm with a needle that cauterized a nerve ending that alleviated all pain symptoms. I can't remember where in the spine it was performed but it was only in one location and then she'd come home and a day later be back to normal. She also had one 5 week period with no pain when she got off a fetanyl patch (post-withdrawal stage) that she had been on for about 18 months. Which is another baffling thing for me to try to wrap my brain around.

    Thanks for giving me options!

  • When you say she vomited food, was it completely digested food, or was it a bolus / chime that was regurgitated without having been broken down / processed? (If you recognised the food, it sounds like it had not been digested). That might give a clue as to how far the food had gone down before coming up again. Sometimes food blockages can trigger off a nerve / spasm reaction.

    I wonder whether the RFA procedure that you describe has had an effect on the motility muscles in the new stomach? There is a condition called gastroparesis that has to do with delayed stomach emptying.

    I wonder whether it is possible that the RFA created some form of scarring / stricture that is creating a blockage?

    I wonder whether it is possible to have some sort of scan that tracks the reaction of the nerve system; and one that measures the delay in food passing through the digestive system? (perhaps a barium swallow would do this?).

    I wonder what would happen if she simply had soup and liquid for a week, taking them both very slowly so that they did not stretch the system too much?

  • Slow movement of food may not be good for pain. I suffered/suffer from this. In my case I have had several dilations of my stomach exit. That gives immediate relief and last for several months. The window between stretches is increasing after each stretch (which is good). My surgeons refer to this as poor "motility" and tell me it is fairly normal after this kind of surgery.

    It can be diet related as certain foods do not break up as quickly as our new plumbing requires. This means that they sit there until the next meal arrives and pushes/forces them through our now scarred plumbing, rather than the normal digestive muscular process taking place.

    Smoking weed or any other substance may also be a factor worth looking at. Smoking is known to cause changes to the digestive process and in some cases is used by individuals as a laxative.

    I wonder if she is suffering from severe dumping syndrome?

  • I'm going to look into the severe dumping also. I was talking to her last night about all these responses and she said the over eating pain is different than the extreme pain she sometimes feels. So now I'm more confused but have more things to bring up to the doctors.

    Thanks again for the input!

  • Hi jessefrye

    1) If you think that spasm is a possibility here is a suggestion - strictly off prescription!

    Loperamide is a morphine derivative, but completely without the usual opioid intoxicant and adictive effects, due in part to the fact that it is entirely removed by the liver upon the first pass.

    It's action is to paralyze the action of smooth muscle in the intestines, IE it inhibits peristalsis and so is an over-the-counter short term palliative for diarrhea.

    It would be interesting to know if its action reduces spasm. But beware of becoming constipated if your wife in fact has silent slow emptying.

    2) In your interests you list gallbladder removal. Has your wife had a cholecystectomy?

    3) Have you considered wind? Even 25 years after my IL this is the major source of my pain.

    I have developed a technique to wind myself, rather as we do for babies, before going to bed and this is usually successful.

    Also, after about 15 years I re-discovered a working nerve which now allows me to voluntarily contract the stomach tube, producing a satisfying burp. If you go here -

    healthunlocked.com/oesophag...

    you will see how the revised plumbing gives plenty of scope for gas hang-up.

    4) Have you tried Tramadol? This acts on pain perception centres in the brain.

  • 1) I believe we have tried that. I will ask again and see if it works.

    2) I'm not sure what the procedure was to remove her gall bladder. Post Ivor-Lewis she still had pain/nausea so for some reason they removed the gall bladder as well.

    3) Wind could be a possibility. It's just so infrequent and she'll go weeks with no pain nausea or sometimes we get caught in a daily vicious circle.

    4) Tramadol is a prescription she has and it doesn't help much.

    Update: Quit smoking weed for 35 days which lead to daily or twice daily pain episodes during which she took opiates for the pain. We tried THC-A and so far have had 4 good days. She wakes up before me, has way more energy than me and is able to go out and have a social life. We've had plenty of false positives before but we're going to try to ride out what we're doing now to keep the factors down to a minimum. I will definitely pass along this information to her if the symptoms come back. Crossing my fingers that they never do!

  • What you have just posted is revealing, apropos her gallbladder.

    1) Does she suffer from Diarrhea?

    2) If yes what is the colour of her stool?

  • No she has regular stool and bowel movements. It's quite baffling!

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