Achalasia & Surgery
I would like to hear from those who have had their esophagus removed, not for cancer, but for Achalasia. Your stories, advice, and so forth would be appreciated. [I have 'not' had my esophagus removed.]
had major surgery 3 years ago for alaclasia been fine
Could you please share with me, at which point did they decide to do that surgery?
At the Achalasia group a couple of meetings ago, a young woman had recently had the surgery, ten days earlier, and had travelled to the group to tell her story. What provoked the referral for surgery was her partner's hearing her distress during the night when she was suffering from aspiration into the lungs.
Thank you, Alan.
when I lost 5 stone due not able eat or drink surgery was 8 hours
This weight-loss, was it over a great or short period of time? Do you have Achalasia? When you say not able to eat or drink, was everything simply sitting in the esophagus, with very poor clearance into the stomach through the LES muscle? or, were you throwing up anything that went into the esophagus? I appreciate any information or advice that you can share with me.
yes I have achaiasia as soon as iate r drank any thing just sick was in and out hospital several times due dehydration musle that enters stomach would not open it still sticks now drink loads water with meals it eventually goes
Thank you, Keith for sharing. I get nausea, but don't get physically sick [not sure that I can!]. Haven't been to hospital because of dehydration, but have the same problem with the LES muscle at the entrance to the stomach; have to drink loads of water with anything that goes into my mouth, and yes, eventually, slowly, it goes into the stomach, but this can take hours.
I’m almost two years from my esophagus being removed as I had end stage achalasia. Still struggle some but I’m living, working and I appreciate life more than ever
Can you tell me what you mean by end-stage Achalasia? And also, are you now able to eat anything you want, small amounts of course? I have had the Heller Myotomy surgery, the fundoplication, 2 balloon dilations, all in an 18 month period. All procedures have been unsuccessful. My esophagus is totally paralyzed, done. The LES muscle opens only when it feels like it, and it gives very poor clearance from the esophagus into the stomach. Everything sits, and I feel the liquid especially, sitting at the top of the esophagus, back of throat. I appreciate what you have shared so far.
Had mine removed 1995!! Due to achalasia, would do it over again in a split second it was the best surgery I've ever had my problems began in late 1974 I had dropped 50 pounds and no one could figure it out, even blamed it on my allergies Back then most doctors weren't familiar with achalasia definitely never had an achalasia patient. Most thought I just had an eating disorder!! Until I found University of Alabama Birmingham (UAB) they had never had achalasia patient but as a teaching hospital I became their project. They were awesome. One of my doctor's knew a specialist in California and would include him on any discussions about my treatment plan. I had 2 myotomies (1976 and 1988) each made it possible to eat but I suffered with reflux, chocking, not a good quality of life. I had balloon dilation, Botox, many many more studies and procedures that I don't remember nothing was working In 1995 I'd had enough something had to be done. I had been in and out of the hospital so many times the other doctors and nurses knew me by name on sight! I've had to stay inpatient 3 months twice and 6 weeks too many times to count. I said it was time for the big surgery I opted for the gastric pull up I have never regretted it I didn't know what to expect just learned as I went along. I thought I must be the only person in the world with no esophagus until the internet since I've learned so much I still haven't located anyone whose surgery was as long ago as mine, I wish I could be it would be nice. Even now doctors don't know what to do with me and they mainly let me treat myself. I live a pretty normal like. Over eating or under chewing is a big no-no. I I eat basically anything I want just small portions I still get dumping syndrome when I do mess up and either over eat or eat something ithat disagreed with me. but I can live with that.
Sorry this is so long. I was truly blessed to find doctors that cared and wanted to help me and how easier I seem to have had since esophaectomy than many others I'm reading about. I believe positivity plays a huge role in dealing with achalasia and that's hard to have at times with this horrible disease I would wish on no one
Oh I was 22 when achaladia began and I am 66 now
Connie Hodges (USA)
Thank you so much, Connie! I am glad that your reply is 'long!' I am 68. They figure I've had Achalasia for decades. It was only diagnosed in 2016. You have given me very valuable information. Can you eat bread [ie a piece of toast?], pizza, normal-people food??? You are right, it IS hard to live with Achalasia at times. I have been pretty strong, but lately, tears are sneaking out at times....you know those moments, when everyone around you is enjoying a meal at a restaurant, and you are eating soup; or at a potluck, family or friend gathering, and everyone is enjoying all the different foods, and you are eating....well, what can we say...you understand. When I'm 'invited' to someone's home for lunch, they ask me to bring my own food....
My heart goes out to you. I remember those days. yes, I eat most anything, pizza is one of my favorite foods. Most bread I can eat. I'm from the south and corn bread is a staple and I eat my fair share of that!! The main thing I have to remember is eat slow and chew long. I do have problems with meat it's a little harder to 'get down' venison is the easiest meat I can get down. I guess because it's less stringy and not greasy. Ground beef is my worse enemy. I like to go out to eat and normally have no problems. Since I have to eat such small portions many restaurants will allow me to order children's portions, or I just get a doggy bag to go. Have you had the ectomy? Planning to?
Oh, one problem I do have is I can't go for long walk just after eating, I can't explain exactly why or how it feels I just can't do it. I make sure eating is the last thing I do before going home
If I can ever be of help or even just a sounding board I'm available. For many, many years I had no one to talk with that understood what it's like
Thank you, Connie. You give me hope. I am not scheduled for anything right now. Am waiting to get an appointment with my GI [a wonderful and compassionate man]; you might say, that I am in 'limbo.' I'm doing the 'research' right now, ahead of time, so that I might be prepared to have to make some decisions. I so appreciate what you have shared. I've never liked meat much, so not having a lot of meat in my diet right now, has not been an issue - its everything else! And you are so right, unless a person has Achalasia, they really cannot 'understand' what its like. Thank you again.
In A Patient's Guide to Achalasia that you can download opa.org.uk/pages/achalasia....
we give some of the food that gives people most trouble. Bread is one of them because it can tend to stick and congeal, a bit like rice, at the bottom of the oesophagus. Anything with skins, like tomato, can be tricky, because it still has that texture in the chime (chewed but not digested food) before it tries to pass through the lower oesophageal sphincter into the stomach.
The best surgeons do not recommend an operation unless you need it. If you do need it, but delay things, what effect might that have in the long term on the chances of the surgery being successful at a later date?
At a certain point of becoming baggy, your oesophagus will not be able to recover its natural tone and effectiveness.
Thanks, Alan. I downloaded and printed that guide, about 17 months ago. It is my 'dream' to be able to have at least a piece of toast! Haven't had any bread, or rice, etc., for 18 months. I'm asking the questions about the esophagus removal surgery, just to be informed and prepared, since everything else has not been successful. Always appreciate your information and advice.
Having an ectomy was done after trying everything and anything known at the time. I had a super mega esophagus, I think that is what they called it. It was stretched so bad. Over the 20 years I went from 156 pounds to 129 to 188 to 139 to 87 pounds. My body was tired. I was tired. The reflux was so bad and the vomiting was a way of life. At the 88 pounds I had to wear a feeding tube trying to gain up to 125 just to have the 2nd myotomy. When I checked into the hospital the doctor told me if I hadn't been sitting right in front of him he would have thought he was seeing lab work of a dead person. Oh did I mention the bouts of internal bleeds, I had several of those, would have to have several transfusions. I'm sorry and I'm not trying to be rude or disrespectable as I worked in the medical field however it is proven achalasia in not cureable, if your esophagus is super stretched, why do we have to suffer with the reflux, pain, vomiting, undernourished just to name a few things when an ectomy can give a better quality of life? Yes, try everything medically possible but why prolong the inevitable?
Again, I apologize for the rant.
I have found a positive attitude is a must. Everyone is different and you just have to experiment. One thing I found back then that helped me and I still do today is elevate my bed and only sleep on my left side I use cinder blocks under my bed. Proping up on pillows would actually push the food back up I couldn't sleep on a wedge as I'm a side sleeper. I was a single parent back then and adjustable beds were too expensive so I never tried one You have to get used to your bed being elevated and you'll find yourself sliding down or wake up with your knees hanging over the end but you'll get used to it and I now can't sleep flat!! Esophaectomy is a major surgery, it's hard and it's a long, slow recovery for me it was worth it.
Please stay in touch I promise not to be such a butt next time. Is is legal for me to ask where you live? I live in Alabama in the USA just wondering
Connie, thank you for your response, I so appreciate it. Being informed and education and 'prepared,' better than being ignorant with my head in the sand. I am Canadian. Judging from you mentioning your weight in 'pounds' makes me think that you are either Canadian or American. Now, I have some questions. 'Why prolong the inevitable?" .....so, you feel that the removal of a paralyzed/dead/done esophagus 'is' the inevitable? Can you tell me what the surgery was like - the recovery and so forth? Were you on tube-feeding? If so, for how long? And, how does that work?
And, can you eat whatever you like, as long as you eat small, often, and do not eat trigger-foods [ie the issue of dumping]?
I already have a wedge pillow, which I used a lot in the first year. I 'fight' with that darn thing, as I am mostly a side-sleeper. I do know that Achalasia has no cure and no perfect 'fix.'
My GI is fully booked right now; but I know that I am near the top of the 'cancellation list.' So, it is a matter of waiting for the consult. He and I had a long conversation last Fall. Right now, I eat very little, and everything has to be washed down with water. The LES muscle only opens when it feels like it; very poor clearance. So, after eating anything, and washing down with water, I feel the water at the top/back of my throat. it eventually moves down. But the portions are small, and everything is almost pureed, and the variety is minimal. Heck, most times I don't even 'want' to eat, but I do. I drink a high-protein supplement everyday; sometimes 2 a day, and make a protein shake [which I am getting sick of, again]. I do not stray from what 'works' for me. I do not 'adventure' or 'try' anything new. Last Fall, my GI told me to be 'very, very, careful.' And so I have been. This was after a discussion on if there suddenly was 'no' clearance at all, and everything sat all the way up to the back of my throat....and didn't move. He explained just 'how' that would be cleared....so, I've been careful.
This is no way to live. When socially, much of our life is centered around food. Watching a room full of people enjoy a family gathering feast, or a church potluck, or even going out for lunch [now that's a joke!], I have to bring my own food. Again, this is no way to live.
Yes, American, we just never got the hang of the metric system!! I live in the hills of Alabama (look up Little River Canyon National Preserve, and that's about 10 miles from me). The Canyon is where I have always felt closest to my God and spend lots of time there. That's where I'd go when my friends were going out to eat!! I was hungry but what the heck it was just didn't seem worth it to try. I had a 13 year old and he made it worth drinking the mushed up whatever I could get down and keep down food I know how you feel and your misery. Kinda funny story (now anyway) remember how I told you my E was super stretched, once during a Christmas holiday I got a terrible cold and went to a local doctor who did a chest x-ray and when he checked it immediately put me and my household on lock down due to a diagnosis of tuberculosis for 6 days we all thought I had TB until a specialist could look at xrays and discovered it wasn't TB it was my E that was stretched out so bad that it was showing in my chest x-ray, and the local doctor misinterpreted for TB that's when I had 2nd myotomy, funny now not then. That's how little was known about this disease!! Then finally in 1995 it was decided to remove E by then I couldn't even get water down everything came back up and my weight was going down fast. During the Ectomy I aspirated some food that was in the folds of my E and both lungs collasped causing me to be on a ventilator 8 days after my lungs were healed and off ventilator 2 days I went home. I could eat and I did, on my 3rd or 4th day home I had my first experience with dumping and thought I was dying, called doctor, he explained what was going on and gave me a little info on what could be causing it. Back then there was no internet and very little info at library. Here in the south we are big eaters and fried food is normal eating, well not for me I found!! At least not at first through trial and error I learned what I could and couldn't eat. I was truly blessed throughout my recovery, I truly had very little problems. I have read so many others who are still going through misery after their Ectomy. I was told they removed almost all my E there fore I would not have reflux and probably couldn't vomit any more and they were right which is awesome in most ways except since I can't get food that doesn't agree with me up means it's got to work itself out the other end and while that process is taking place I have "gas" and its gonna come out and most time stinks up the entire room or car!! My friends and family are used to it now and just laugh at me and leave the room or threaten to throw me out if the car. That part is still hard to live with when I'm out in public it's embarrassing A couple years back I had a bleeding ulcer. Every few years I have to be dialated I just call gastro and they book me straight to the GI lab don't even have to see doctor first. I don't take any meds considered NASIDS as all that irritates my stomach lining. I try in every way to protect what I have left as I told you before it is a long, slow recovery but your eating habits must become a way of life, you'll never be a regular swallower but you can learn when and what you can eat Introduce food slowly do not be in any rush I think the best advise I can give you is to start slow, eat small portions, chew until you can't chew any more on every bite. Overloading your stomach will cause you misery
Over the last 10 years I've found I can't walk a long distance just after eating, I still get dumping (usually my own fault). I am truly one blessed patient that really didn't have any major problem after Ectomy. I was back at work within 3 months, started working a few hours a day until I felt like staying all day which took about 3 more months. I had a desk job at a hospital and they really worked with and supported me. I love pizza with everything on it. My first one I ate a whole slice which was a big mistake. I know now eat a few bites at a time until I can handle whole slice which is still all I can eat at a time. When I have toast I still have to be careful to not rush but I can eat it. I still can't eat a bagel which we don't have much of here in the South. The last 18 years I lived in Louisiana where rice is a staple and I find unless it's soaked in some kind of sauce I have to pass it up. I can't think of any kind of seafood I can't eat except squid and octopus, which I don't care for anyway. I went through a divorce last year and moved back home to Alabama and I'm learning what I can eat again it's completely different food from Louisiana. That's why you have to adjust to a new way of life for the rest of your life but it's worth it. More advise if you're gonna eat something with a tough peel, remove that peel I love tomatoes I just peel them first
Wow I got on a roll didn't i? Guess you can tell I'm retired and have plenty of time on my hands. Think positive, don't rush. Until you can eat again just take that awesome pureed shake and tell yourself it's a pizza and enjoy it. You are gonna get to where you'll get the real thing eventually. I hope you get to see your gastro soon.
PS: it is awesome having someone to talk to. Thank you
I write just like I talk one big long sentence. LOL
I again appreciate the information you have shared. Hope we can shift over to emails....let's give that a try.
Just emailed you
and back to you!
Reading your messages back & forth...it's good to see you've found support in each other. I've had achalasia for decades as well, with stretches in the 90's and Heller myotomy in 2000. Then more stretches and a partial esophagectomy in January this year. 5 more stretches since, about a month apart, as the effect doesn't seem to last. I agree it's something we just have to make the best of. Our reality is different from the norm as far as food goes. It's been good to read about other's experiences. For years I felt like I was practically alone in this. God bless the internet. Thanks for sharing what you did.
Keep on sharing! We are a 'unique' group, although I would suspect that none of us really like being a part of the 'unique group of people who have Achalasia.' We would rather eat normally and enjoy all the lovely food out there. By sharing, we do support each other, and thus, we realize that we are not alone.
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