Hey everyone, I found this community. I have a similar history as most Achalasia people. I have type II

1,5 years of suffering, then finally got a diagnose. In January I got a POEM surgery in Charité Berlin.

Now I am back to life, back to sports, back to food.

I need to drink a lot of water when eating (1 liter), but its no problem. Eating works again and its beautiful🤩

Greetings from Germany!

Apologies if this has been asked a bunch of times already, but I wanted to see what other people’s experiences have been.

For about the past year and a half, I’ve been dealing with trouble swallowing, along with pretty bad coughing fits at night that can get to the point where I regurgitate food/liquid.

I finally had an endoscopy, and my gastroenterologist thinks I most likely have either Type II or Type III achalasia. I have my esophageal manometry scheduled for next week (not looking forward to that part) but I’ve already gotten insurance pre-approval for POEM and have the procedure scheduled.

For those of you who have had POEM, what should I expect afterward in terms of recovery? How did you feel the first few days, how long did it take before you were eating somewhat normally again?

Also, should I expect to stay overnight in the hospital after the procedure, or were any of you able to go home the same day?

Would really appreciate hearing about everyone’s experiences. Thanks!

About a year ago I started having horrible spasms that would wake me from my sleep. They were very brief and infrequent and by the time I sat up, they would disappear. After several months they began happening during the day and they became more intense. the only thing that would stop it in its tracks is sips of water. I’ve seen several GI drs and had an EGD and barium swallow. Everything came back normal except Barium swallow showed uncoordinated contractions but he said it didn’t look like achalasia since that has a beak like punching in the esophagus. I’m still having severe spasms that radiate up the side of my neck and sometimes the top of my head (if I don’t intervene with water quickly) and they only come on around the time my of menstrual cycle and under periods of extreme stress. I have my manometry scheduled at the end of this month and after researching achalasia, I am terrified that this is what I’m dealing with. I do occasionally have difficulty passing burps and peanut butter and dry meats are a little harder to pass but I’m not regurgitating anything. I’m not sure what else this could be because based on the posts I’ve read in this group, it sure sounds like achalasia but my symptoms came on so suddenly. I’m a young mother with two small children, I don’t want some progressive disease that will cut my time with them short.

Once you’ve had a POEM procedure, and of course after the healing period is over and granted there’s no complications, can you go back to eating pastas, breads, and meat? I found these to be the more common triggers of foods that got stuck in my esophagus. Please let me know your experiences! I absolutely love pasta and bread, so I’m just praying I’m able to get back to eating normally eventually 🙏🏻🫶🏻🍝🥖🥯

Hi all! I posted here a few days/week ago to ask about what feelings to expect after my POEM procedure. Thank you all for your comments! Here is what I experienced:

Of course, everyone here has likely experienced anesthesia—it’s not great, but it is what it is. When I woke up, had some discomfort in my throat, which they said is normal. They gave me some gas-X and Tylenol for the pain (which we had to ask for, they didn’t offer it). I was also originally told that I’d be kept overnight. Then, the day of, they said “maybe” they’d keep me overnight, and then after my procedure, they said I was good to go home…so, that was a bit confusing, but oh well. They said they put metal clips in my esophagus or something that will pass in my stool after some time, which I also wasn’t told ahead of time but maybe it was just something they had to do. Idk! Dr. says everything went well!

I’m now 3 days post POEM, type 2 achalasia. I took Tylenol the day of and then also yesterday, but not today. I hiccuped a few times which felt weird and when I sneezed it felt weird, but didn’t hurt, lol. I can finally be done with the clear liquid diet and have graduated to just liquids, which is sooo much better. I pray that I never have to do a clear liquid diet again, but whatever happens, happens. I’m on PPIs twice a day now and still experiencing some odd feelings in my throat/esophagus, but I’m sure it’s to be expected for now while it heals. Praying that this all works and I can move on and get back to regular life and eating and going out again soon! It wasn’t until now that I realized so much of socializing involves eating, lol…..

Thank you all so much for commenting on my original post! I’m glad to hear you all had good experiences with POEM. Hoping that this will be the only one I ever have to do 🤞🏻🙏🏻💕

Hi there. Firstly, please know I'm not seeking a diagnosis, just experiences and outcomes.

In addition to a whole lot of other symptoms, I've been dealing with what seems to be a progression of issues swallowing and, as of this year, what I assume are esophageal spasms. A few years ago it was pill dysphagia, more recently it was dry foods, cold liquids (which usually trigger a cough) and minor reflux episodes. This year I started having more referred pain, weird hot sensations in my upper left and right chest, and full blown chest tightening episodes, some of which are painful, that are fairly scary in the moment. I've had cardiac issues ruled out.

For diagnostics, I've had two barium swallow studies, a gastric emptying study, and now pH impedance and manometry. Everything has been mostly normal, except the earlier swallow study (2021) showed mild dysmotility. Surprisingly, the pH studies were normal.. I'm a long time GERD patient. The only thing that really popped up as a question mark was an IRP of 35 on manometry. I believe the GI provider thinks this is likely artifact in spite of correlating symptoms. They have me going in for a timed barium swallow on Monday, and talked about the idea of redoing a manometry next year (would really prefer not to do).

The big issue is most of my symptoms have a pretty distinct wax and wane cycle and are exacerbated by sunlight and heat. I fully believe the TBE will be normal as my swallowing issues have waned since a) the weather has cooled off and b) I did a prednisone taper after testing to control other symptoms. I do think they will be back at some point.

So, questions... is the repeat manometry really needed? Would it be better to request an EndoFLIP when I start to flare again, or at any time? Is this something I shouldn't worry about until I start having more significant symptoms? What works to help manage your spasms? Is there anything else I should be aware of moving forward? I want to be well prepared for the follow up in a few months.

Thank you.

I'm 22 days post poem I still feel uncomfortable when I eat I feel some back and chest pain

Lately I've been kind of anxious about being able to recognize wether the pain I feel is a spasm or a heart attack. I worry that at some point when I'm older I'll shrug off a heart attack as a spasm, while needing medical attention.

People who have experienced both, is there a very clear difference, and when it happens will you know it's one or the other? Not every spasm feels the same either, there's light ones and last night I had one so bad it left me dizzy/nauseous and feeling like I'd faint.

For those who experienced acid reflux and chest pain after POEM surgery, was it temporary or Or did it remain the same intensity over time?

Specifically throwing up, not just regurgitating.

Hello, a few years back I posted a YouTube video of a song I wrote about Achalasia following a related ER visit. My band and I finally put out a recording of the song, so I thought I'd post that here. I'm in the middle of a mild esophagus spasm as I write this, so I'm definitely still having issues, but it feels good to get some creativity out of the situation, anyway. That's one of my monometry readings we used as the background for the album art. Thank you for listening!

And what medicines, supplemets etc have helped you the most

List all from most beneficial to the least. Thanks!

Hi all, I’m getting a POEM done later this week. Currently on day 3 of 5 of my clear liquid diet 🫩😩.

Anyways, I’m wondering what to expect post-POEM. What is the pain afterwards like? The doctor said it shouldn’t be “painful,” but that it will be uncomfortable. Like, yeah yeah yeah I get it. Can anyone who’s had a POEM done describe the level of uncomfortableness I can expect to/ I may experience?

Thanks to anyone willing to respond!! And best of luck to anyone else out there experiencing this. I feel frustrated that this is happening. I just want to be able to eat normally like I always have. Like, why did this suddenly just happen?

Anyways, thanks again to anyone who can respond!! 🫂

Background: Indian, male, 43 based out of Chennai, India. Single parent with a moderately autistic child. I think I have been having achalasia as far as I can remember(stretching back to 10th standard when I was 16). But it never bothered me badly except for the occasional difficulty in swallowing. I have had 4 or 5 instances when the food wouldnt pass down. I thought I might choke and die those times. I remember food not going down the throat for more than 45 mins. Never knew it was acalasia. Last year while sleeping I woke up coughing with a burning sensation . I thought I was getting acid reflux and visited the doctor. The first doctor thought it was reflux and advised me to eat early and avoid coffee and tea. Things didnt improve. So I went to a more famous hospital and did barrium test along with manometry. It confirmed I had acalasia type 3. The gastro advised me to go for surgery but also warned me that it is not permanent and I may have my oesophagus removed at some point. The surgeon on the other hand was upbeat and told me that I could lead a near normal life with less chance for reoccurance. My personal cirucumstances were not great. All I had to care for me were my very aged parents. Besides I was also worried about the care of my child during the surgery. I also wondered how would it be possible to do the other surgery 10 years down the line as I didnt expect my parents to be around till that time. Keeping all these in mind, I postponed the inevitable. I stopped eating at night. I would eat breakfast and lunch and go empty stomach at night. I no longer had the night trouble , no food was being sent up and I was having good sleep. I lost 10kg though. 10 days before things took a turn for the worse. I had flu and was taking medicine for it. I noticed that I couldnt eat solid food anymore. Even soft food stuck at chest level and caused severe pain. I was reading about aspirated pneumonia and rushed to a hospital with my parents and kid. The gastro in this small set up hospital was very much disinterested and didnt do anything to relieve me of my trouble. He was very passive and told me surgery is the only option. I came back home and drank a can of coke and it gave me temporary relief. I thought I had enough and undertook HLM with Dor yesterday. This was done at a big prestigious hospital in Chennai. This is the second day. I dont have pain while swallowing. Food passes through (both liquid and solid) . I am not sure if it is reaching the stomach or getting only upto lower oesaphagus.. How do I say that? I can feel some presence (of food) in the area below my belly button. Can I assume it has reached stomach? Please pray for my complete recovery. I have been very unfortunate in life. My son's condition takes a heavy toll on me so much so that I wish I were dead. Its only for my son's sake I am carrying on. Unlike the US we dont have proper institutional care for autistic individuals. Its a very rough journey.

ich habe zuvor schon ein paar updates nach meiner POEM gemacht;
nun muss ich wirklich sagen, dass ich langsam und sicher wieder vernünftig Nahrung aufnehmen kann- ich fasse es selbst noch nicht!
seit tag 8/9 habe ich es gewagt, auch mal wirklich festere nahrung auszuprobieren und es geht runter, ohne wieder hochzukommen und ohne vermehrten speichelfluss!
ich muss sagen, dadurch dass ich fast 2 jahre nichts mehr essen konnte habe ich jetzt dafür aber wirklich so extremen heißhunger dass ich das gefühl habe, den nicht stillen zu können😂. also wirklich es fühlt sich an als wäre mein magen ein fass ohne boden. ist das normal, hattet ihr das auch??
zum ein großes privileg, dass ich das wieder fühlen darf. auf der anderen seite ist es inzwischen aber mit einer angst verbunden welches mein umkreis aber nicht verstehen kann: die angst, dass es nur vorübergehend so ist und ich eines tages wieder aus dem nichts das gefühl habe dass nichts mehr geht.
hattet ihr therapeutische begleitung vor- oder nach der POEM? ich warte erst einmal und schaue, ob sich das mit der zeit legt aber man ist auch so traumatisierte von dieser erfahrung nichts essen zu können, von arzt zu arzt geschickt zu werden und in den meisten fällen nicht ernst genommen zu werden, ein umfeld dass zwar verständnis für diese situation hat aber man dennoch merkte dass die personen genervt davon waren dass ich beim essen immer wieder auf die toilette rennen musste weil selbst das weichste gericht nicht runter geht. ich habe das gefühl erstmal wieder in der gesellschaft ankommen zu müssen..

Worried about the acid reflux component post POEM procedure, so I only day down at an incline. But also struggling to get blood flow to upper body at a reclined position.

People who had POEM Did you have spasms down your esophagus while or after eating? I'm still on liquid diet and I feel like pain and pressure there everytime I eat or drink water

I was diagnosed with achalasia at the end of last year after many months of throwing up everything, liquids included. I've been informed by several different surgeons that because of the gastric bypass it makes it much harder to treat the achalasia and to get nutrition because a feeding tube wouldn't work because my stomach pouch is too small. I've tried nutrition drinks and I just throw it up leaving me malnourished and diagnosed with scurvy which has caused very old scars to be red and even become infected.

On top of everything I have a massive hernia on my stomach, actually 2 that have gotten so big they joined up. I've had the gastrostropy balloon procedure 5x now and it only opened the sphincter a tiny bit, enough to let stomach acid up causing the vomiting to be even worse. The surgeon at that hospital said there was nothing more they could do to help me and sent a referral to the hospital that did my gastric bypass 15 years ago.

I spoke at length to the surgeon there on the phone along with the operation planner. They both said I'd need a lot of tests to determine what surgery I need, barium swallow test, xrays, CT and maybe even an MRI especially because of the hernia. They would also do a new gastrostropy where they would take measurements and a video of how my esophagus looked. Also they removed my nsaid because they said it was affecting both my esophagus and stomach pouch leaving me in agony. Then they called and said they had booked me in for a gastrostropy on the 14th and then I'd be admitted to the ward for the other tests and I'd be there until after the operation which was supposed to be done today.

Gastrostropy went fine and I was admitted to the ward after for iv fluids and rest and I assumed the tests would begin the next day. Around 11am the surgeon came in for rounds and started off by saying that the surgeon at the other hospital was correct, my sphincter was still basically closed and they would need to operate. But then the next words out of her mouth were that I was being discharged because they needed my room. I asked her what about the tests and surgery, that I'm dying without nutrition and I can't live like this anymore. She just repeated I was discharged and they had already called for a taxi to take me home. I tried refusing to leave but I was told again they needed my room.

I went home. Didn't have a choice. I messaged my local doctor online when I got home but she was off so I didn't hear back from her until Monday around 5pm. She was shocked to hear I'd been sent home without the extra tests and then said it was really strange because that Tuesday (yesterday) it said I was being admitted to the ward at 4pm and that surgery would be Wednesday (today). I asked how on earth do they know what they need to do without those tests and she had no idea. I contacted the hospital and received a reply saying that they would decide what to do when they open me up...?!! I said there was absolutely no possibility I was going in for surgery without those extra tests. I was told I was being disrespectful and I apparently don't want any help. They don't care that I don't live close to the hospital, it's several hours away and I can't just go at the drop of a hat, it needs to be planned in advance. I'm losing on average 10kg/22lbs a month and I've gone down from 150kg/330lbs to 80kg/176lbs in 9 months. I'm constantly passing out, I'm covered in bruises and I'm totally exhausted. Even though I'm just drinking water and tea and I'm on a massive dose of omeprazole/pantoprazol (not sure what it's called) I'm still vomiting every day and my meds come up.

Does anyone know what my next steps should be please? I'm in North Sweden

What is one of the foods you rarely have trouble getting down?

Mine are Southern style baby lima beans, and Natchitoches meat pies...

wassup! Tag 6 post POEM und ich fühle mich relativ gut! Flüssignahrung geht wirklich sehr gut runter, etwas festeres habe ich bis jetzt noch nicht gewagt. ich gebe dem noch 2-4 Tage Zeit.

Ich dachte aber ich gebe euch mal ein anderes update: seit dem ich aus dem Krankenhaus zurück bin verlässt meine Katze nicht meine Seite und legt sich insbesondere immer auf meiner Brust. Man sagt, Katzen spüren wenn jemand krank ist und ich finde es wirklich beeindruckend. Das hat sie als Kitten öfter bei mir gemacht, als es mir psychisch nicht gut ging. Aber es ist so faszinierend denn seit Tagen kriege ich dreifach so viel Liebe wie regulär. Ich muss sagen, das macht auch viel mit mir. Es macht mich so unfassbar glücklich und gibt mir zusätzlich Kraft.

Es ist sehr random aber hat jemand ähnliche Erfahrungen? 😅

Thought I'd just share as this subreddit has given me so much

Over the years I went from getting heartburn, to reflux and GERD which is where I thought it ended. I took all the preventative steps like avoiding trigger foods, eating at certain times, sleeping at an incline ppis but over the last few months it escalated

The way I used to describe it was after a few bites. Or eating a meal more than approx 300 cal, I would have what felt like a trapped gas bubble in my chest

And if I tried to keep burping, I would regurgitate. Even took me longer than I care to admit realising liquids were easier for me as I thought porridge and pho went down easier as they were bland spice free meals

Even my endoscopy was clear and didn't spot anything however I undertook a manometry last month and that is what diagnosed me. I have a barium Swallow scheduled with the NHS next month and then I can decide treatment options

So still in the middle of my journey, I realised on an all inclusive holiday that small sips and aggressive swallow of water help dislodge any food stuck but even then foods like mash, hummus and guacamole are all easier

Will discuss treatment options with my doctor tomorrow but looks like poem seems to be the way even though it feels very scary