Longterm post-op side effects? (esophagectomy due to Achalasia)

Hi everybody, I'm new to this community. I'm 34 years, had Achalasia since childhood, went through numbers of treatments, including Hellers myotomy and finally esophagectomy with colon interposition in january 2007. Had some complications after ectomy, and had to stay in hospital for eight weeks. I had a slow recovery and couldn't swallow at all the first month after ectomy.

However, things improved slowley, but I'm still far from a normal life. I still get dumping everyday, even from "good" food. I can't put on weight, so I'm still underweight. But my main concern now is this:

I have a lot of throat issues since ectomy. I can swallow, but it hurts after I have eaten. And I have a lot of phlegm in my throat. Actually, if I open my mouth you could sometimes see phlegm hanging down like a thread in the back om my throat. (Sorry for getting gross)... Is that a sign of some kind of infection or what?

Sometimes it's so hard to swallow I almost fear eating. Feels like my throat muscles need to work so hard to get things down. I've told my doctors this, but last xray and scope (in 2010) showed no narrowing. They said it looked fine.

I also feel difficulties breathing because of this, since the muscles in the throat is partly the same for breathing and swallowing.

Is this normal long term side effects from ectomy? Why is it hard to swallow and breath? I don't really understand the mecanisms.

31 Replies

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  • Forgive me if you know all this already, but there is something called the vagus nerve that affects the signals to the brain that affect the swallowing and digestive mechanism. When you have an oesophagectomy, this nerve will almost certainly have been cut, and it then plays havoc with your system.

    One of the things that happens is that food rushes through your system at a faster pace than normal, and the insulin gets released to compensate for large sudden rushes of sugar.

    So "good" food might need to be low glycemic index /load to spread out the sugar spikes, even if it is "good" in relation to other aspects of nutrition. So eating little and often is important.

    I would try and see a specialist dietician. There may also be medication like liquid immodium that might help, but it would need to be prescribed by your specialist medical team.

    Thus far, in relation to digestion, 'dumping', and absorption of nutrition and minerals etc you have lots in common with others on this site.

    As far as you as an individual are concerned, your history is more complicated than most. It does sound as if there is some sensitivity in your throat. I am wondering how far up your interposed colon comes to your throat, and whether this aspect affects how your muscles react? As I understand it, this technique is unusual compared to others who have had a more conventional oesophagectomy, and that colons do not act in quite the same way as an oesophagus would. I think that the pain you suffer after swallowing indicates that something must be happening. I would sympathise if you were feeling tense before eating, and if so, I doubt that this would help the system to become sufficiently relaxed for good digestion.

    You have had over 5 years since your surgery and I think it would be worth persisting to try and gets answers, as far as this might be possible. Much of the answers would need to be from a medical expert who can assess exactly what has happened to you. I am wondering whether an ear, nose and throat specialist and/or gastroenterologist might also be helpful, and whether plotting the way ahead with the assistance of your GP might be a good idea? Even if it comes to a referral to another centre of excellence to double-check on whether all is being done that can be done for somebody at your stage, it might be worthwhile?

  • My whole esophagus is gone, so the colon comes just beneath my throat. That might affect swallowing, I don't know.

    It's really difficult to get an answer from doctors around here, they say there is nothing they can do, and they are reluctant to send me to a doctor in an other region, where I had the surgery (I live in Sweden). But I guess I need to make another try...

  • By the way, could it be som kind of mild laryngospasm, this feeling of not being able to breath properly after eating?

  • In Britain there is a charity called CORE that does some good fact sheets on dumping and other issues

    corecharity.org.uk/Informat...

    corecharity.org.uk/Dumping-...

    Also have a look at some of our information on

    opa.org.uk/downloads.html

    and

    opa.org.uk/regional-shop/lo...

    You might like to try our helpline as well +44 (0)121 704 9860

  • I had the ectomy because of Achalasia back in October 2004 and sympathise with Cortex with the swallowing problems though i had the gastric pullup and not the colon interposition. Your info to the Core website is very interesting. Thank you. I shall follow up this post.

  • Did they attach the stomach or use your intestines> I am having surgery in sept. They cannot use the stomach as it doesnt work just like the esophagus due to scleroderma. they will be bypassing the stomach and attaching the intestines. I cant find much info on it at all. I see dietician next week but just trying to be positive and educating myself on what I will eat after? I am 60 and have been sick for 5 yrs now. I aspirate all the time so reason it needs to be done.Thanks for any help.

  • When i had my oesophagectomy they cut most of my stomach away and used the rest to make another gullet and joined this new tube to what was left of my old gullet. To find more information about different oesophsgectomies then google the words " versions of oesophagectomies" and see what comes up on the screen. Your doctors can use a portion of your intestines to make a new oesophagus when the stomach cannot be used. As i have said try googling "versions of oesophagectomies" or just plain "oesophagectomy". Hope all goes well with the surgery in September. Where are you having it done?

  • Hi there,

    Although I had a different form of operation, I did suffer from some of the throat symptoms you mentioned. My throat would tighten and I would not be able to swallow. I had many stretches and swallow tests, which did not show any issues. After a while I became convinced that I was having with muscle spasams or air blocks. I've been taking an anti anxiety pill called amitriptalene which has helped greatly, 20mg/day. It may help you and worth mentioning to your doctor.

    Regards,

    Jay

  • I think this is worth considering for some people, and obviously you should discuss it carefully with your doctor. There is a little bit more about amitriptyline in the results and comments section on the latest poll about digestion problems more than 5 years after surgery.

  • I saw this thread and joined the site so that I may help with some answers if that is OK.

    I had a total esophagectomy in 2010 at the age of 39 due to end-stage achalasia. My course may be slightly different than some as the way that my Heller Myotomy that was performed (2000 while in the US Army) did lead to some of the need for the esophagectomy. The myotomy was apparently done too "aggressively" and lead to a common compartment of the stomach and esophagus, meaning that gravity was no longer effective in causing food to drain. I say this because the esophagectomy may have been a little different than the "typical" in order to remediate problems from the myotomy.

    The suggestion above for a consult with a dietician is very appropriate, because a dietician can give you a sample diet and tell you certain foods to avoid.

    If this thread is still active, and you want some ideas of the foods I eat (or any other way that I can help), just post back. I'd be happy to share with you. I don't want to put a lot down until I see there's a need for it.

  • Chris, you are very welcome to share your experiences on esophagectomy due to Achalasia! Do you have any side effects from the operation? Can you live a somewhat "normal" life?

  • Sorry for the delay. With Chrismastime being so busy, I am now starting to get back into my normal routine.

    And for me, routine is everything. I have a set eating routine which involves three main meals (0600-1200-1730) and three "snacks" or lighter meals (0900-1500-1930). I cannot eat anything after 2000 at night to try to prevent nightime regurgitation and aspiration. I must limit sweets and fatty foods and eat small meals due to the Dumping Syndrome, and take antidiarrheals before each main meal.

    My diet is so much better than before surgery. Before the esophagectomy, eating was a fight, and food was the enemy. Now, I do have some appetite, and eat very well within the limitations of the Dumping Syndrome.

    The biggest issue (now almost three years out) is the difficulty gaining weight. It's not the number on the scale that concerns me, but the lack of strength and stamina. That and some pain issues on one side, hip, and thigh are the main day-to-day issues that I deal with. I did medically retire so that I could focus on getting better. I hope to return to work when able, even if only part-time.

    I was malnourished at the time of the esophagectomy due to the severity of the achalasia. I feel like I am still climbing out of that hole. I did have a feeding tube (J-Tube) for about two months and was completely NPO (didn't swallow anything, even saliva) for six weeks.

    It was tough, but had to be done. I shudder at the thought of where I would be now if I didn't have the surgery. I had to push my GI to even get sent to a surgeon, and the surgeon in one day of testing told me that I needed the surgery and had a limited window in which it could be safely done.

    I certainly don't want to scare anyone, but to give an accurate portrayal. My situation may differ from most since the failed myotomy likely casued some of my problems, but my situtaion is probably fairly representative.

    If I can help with anything else, please let me know. I can tell you the types of food I eat, details of the surgery and recovery, or anything else. Hope this helped a little.

  • Glad to hear you are much better off now than before ectomy. As said, I still struggle every day to get food down, 6 years post ectomy. Some days are somewhat ok, other days are just terrible. Today is such day. I believe it might be scar tissue and bad peristaltis that causes everything.

    I hear many people have trouble with fattty foods, what kind of problems do you get with that?

    Can you eat bread? Meat? Nuts?

    "...eating was a fight, and food was the enemy." Unfortunatelly, that's still reality for me even after ectomy. Had gastroscopy a couple of months ago that said everything looks fine.

  • I hate to hear that you are still having so much trouble getting food down. My surgeon told me that even though almost all the esophagus was removed, the ~3cm remaining that was needed to connect the stomach still has no peristalsis, and will never have it. It is quite possible that the little bit of your remaining esophagus is completely aperistaltic, and the trick is to get the food through that "lead pipe".

    I do avoid foods that have much fat or sugar, due to the dumping syndrome. I have learned to avoid nuts (esp cashews and pecans) due to dumping and their propensity to cause nightime regurgitation/aspiration. I can eat soft, crumbly breads, but not any bread that is doughy. I am not sure of your location, but the best bought bread that I have found is Publix 5 grain white bread in terms of ease of eating. I sometimes make my own bread also, but since I learned about the 5 grain bought bread, I just usually buy it now.

    Most of the meat that I eat is either ground (turkey or beef) or cubed (pork or beef). Small, tender pieces of dark-meat chicken (ie Tyson) work pretty well for me also. I have to avoid bacon due to the fat, but can eat chipped-up lean ham.

    In terms of meals, I have learned to become a pretty fair cook. I am hesitant to eat out a lot, but make things like fried rice, turkey spaghetti, Lo Mein noodles with meat, rice noodles (ie Pad Thai, not spicy), thick stews with well-cooked potatoes and smoked turkey sausage. All-in-all, avery good variey of healthy food. Food that is soft, but not a lot of liquid.

    Being a Southerner, a lot of the normal diet is suitable for me. Chicken Bog, field peas and rice, and other similar things are good. A lot of the Southern diet is fatty and unhealthy, so I have to pick and choose. I also have to limit a good many vegetables. For instance, I cannot eat more than a small amount of greens (well cooked Turnip, Mustard, or Collard greens), butterbeans, or broccoli. My lower GI tract doesn't seem to handle quantities of these types of vegetables.

    Pea pods, cooked carrots, field peas, well-cooked string beans are all suitable. I eat much smaller meals now, but more frequently. My weight is holding steady at a low level (for me, about 25lbs off my normal weight before the achalasia started making it so difficult). My energy level is pretty low still, but I try to do at least one productive exertion a day.

    The routine is truly what keeps me going. I eat because I need to, not because I want to. But I am eating so much better that before the esophagectomy. It is a marathon, not a sprint. Many times, the goal is just to have more good days than bad days, and enjoy the little things. The Gratitude Attitude, as one of my uncles used to say. I think I know what he meant now.

  • Hey...I had my esophogectomy in March of 2012, and I'm still having trouble with gaining weight. My appetite is very small, and when I do eat, it is very uncomfortable. When will I be able to start gaining weight?...I'm steady at about 100 lbs.

  • If your weight is steady, try not to worry about it. The important thing is whether you are absorbing nutrition and that you avoid eating things that cause you trouble. Gradually your system normally adapts to either a new normal weight or to very gradually allowing you to eat a little bit more, but the rule will always be 'little and often' for eating.

  • Hi there, After 2 Heller myotomies, I had an esophagectomy nearly 8 years ago for severe end-stage achalasia. I lost a ton of weight, but in the past 18+ months I have (unfortunately put on nearly 30 pounds. Mainly due to drinking and zero exercise. I had a long recovery, and have, at times difficulty breathing. But I think it is due to both childhood asthma, and that during my oesophagectomy, they had to remove half of my right lung. My achalasia was so severe it had grown and stretched so much, it had grown into and attached itseld to my lung.

    It took several years for the dumping to subside after every meal/eating. Now it only happens when I eat the wrong foods or too much at a time. Now, mostly all is good. I have not had a dilation in nearly 2 years ans so far so good, despite the scar tissue that had occured an blocked about 1/3 of upper esophagus at the surgical site.

    Terrible and frustrating disease. Would not wish it on anyone...not even Obama!! :)

  • The scar tissue around the operation site can be a big issue, but I am glad that that at least seems to be less of a problem now. There is not so much space in your chest, especially when you have eaten, because your 'stomach' is up there, and your lung capacity is obviously reduced so it probably is not surprising that you have had trouble breathing.

    Gentle exercise might well be beneficial for you though - a physiotherapist might help?

    So frustrating, as you say, but hope that it is onwards and upwards for you now.

    Alan

  • Hello: I'm a 64 year old man and I had Achalasia for years until my esophagus was nearly shut. Had a total (non-cancerous) esophagectomy in June of 2010. Still wasn't able to swallow years after surgery. Everything I'd eat or drink was reflexed. Numerous complications and years later I'm finally able to swallow normally again. I lost 80 pounds during my ordeal and have gained 40 pounds back. I've learned through the years that Achalasia with a total esophagectomy is a life changing ordeal which took me 5 years to conquer and I'd welcome anyone in a similar situation to bounce off your questions with me and I'll be straight and forthright will you.

  • Hi youthemanjlb,

    My husband will be getting an esophagectomy in a couple months (cancer not achalasia) and I'm interested in what you learned in order to successfully eat. It seems each case is unique, but I'm interested to hear your strategies.

    Thanks!

  • Hello Karabunga,

    Ok, it's important to know that in my particular case, once my feeding tube was removed (about 5 weeks) I still could not swallow. It wasn't any particular type of food that was the problem. Any food (soft or hard) would not pass into my intestines. This led to very major depression where I was hospitalized twice. Had to retire early and just kept getting unsuccessful endoscopies. Finally, I was able to keep a little food down and very slowly was able to eat again. As half my stomach was used to form a new esophagus, I have little room to 'store' food. Well after nearly 5 years I've gotten to the point of digesting my food again. My depression is under control (with daily medication). I wish your husband a lot of luck with his surgery and may he recover in much less time than me.

  • Thanks for your reply. Gosh, how did you survive five entire years of not being able to eat? A feeding tube? My husband will have 2/3 of his stomach and 2/3 of his esophagus removed. I'm very disappointed that this is the best that modern medical science has to offer. The surgery is far too radical.

  • I did the best I could but the 1st 2 years were the worst. I WAS able to keep some food down w/o refluxing but it wasn't till about 2 months ago that I stopped refluxing but I need to keep my portions very small. As bad as my swallowing issues were, the depression (which was a direct result of my stomach issues) was much worse. Every case is different and I'm anxious to know how your husband does with his post op. care.

  • Thanks again.

  • Hi my name is Scott and my life is very hard right now. But the key is to have a lot of patience.I have somebody you love Liana support you?. There tosupport you. just remember never to eat too much small amounts.chew your food real good and take your time there's really nothing you can eat if it works for you.wish you the best take care yourself well take care of your husband I wish

  • I live in the U.S. and I am coming up to my 16th anniversary of my esophagectomy. It has been a long and bumpy 16 years

    I still feel some discomfort when I eat. The doctors in Boston had to replace the j tube 4 times and in 2008, I needed a gastric bypass for bile diversion. I was vomiting up bile and it was leaking around the j tubes causing 2nd degree burns. My usual profession is nursing in 2014 I pointed something on my xray. My large intestine, pancreas and spleen all popped through the diaphragm and settled behind my left lung. I had that fixed with a mesh implant and the left lung woild not reinflate due to scar tissue. I had a left decortication done in 2014. One can only hope it is now done.

  • Hi my ectomy was 1995. The first few years were on a slow learning curve. From what I've read from others I really am blessed, basically I eat most anything I want just small portions. I still have dumping

    I've never spoken with anyone else this far out from ectomy would you mind talking and comparing our lives this far from ectomies. My email is 34auburn@gmail.com

    To be honest until about a year ago I had never talked to any other ectomy person. I've been flying blind all these years. If you don't feel comfortable I totally understand

    Connie

  • We're did you have you surgery please.

  • Hi, I know you put your post 4 years ago, I'm new to this forum and I'm wondering how you are doing now. I had difficulty swallowing and found swallowing an anaesthetic gel before meals was helpful so too was drinking small mouthfuls of coke. Pity I don't like coke but it does help. The carbonated liquid helps the food go down. Chew thoroughly, small quantities and soft food like mashed potatoes, pumpkin, mushrooms, scrambled egg.

  • I also had phlegm, a saline nasal spray sorted that out, I also have to take enzymes to help my body absorb goodness from the food I eat. When you take them after two weeks the 'dumping' will improve significantly. You will need a script for those.

  • What kind of enzymes? What's the name of that medication?

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