POEM Surgery for Achalasia

Posted by evgenimat @evgenimat, Jan 8, 2018

Hi everyone,
I’ve had achalasia that progressively got worse over the course of three years, to the point where I almost couldn’t eat without throwing up, and drank at least a liter of water with every meal. I just had a POEM surgery done in November (2017) with Dr. Robert Bechara in Kingston, Ontario. I wanted share my experience because, like many people here, before my surgery I scoured the web for hours trying to get an idea of what I should expect. I ended up being very anxious about the surgery, afraid that it wouldn’t work or even make things worse. I now know I fell victim to confirmation bias, since people are much more likely to post a bad experience rather than a good one, and I want to dilute that a bit.
Like many, I was first diagnosed with GERD and took Proton Pump Inhibitors, which obviously didn’t work. After a barium swallow, endoscopy, and mamotomy (ugh), I was correctly diagnosed with Type I achalasia and was lucky enough to be scheduled for POEM only three months later. Dr. Bechara and his staff were incredibly friendly, communicative, and accommodating to the fact that I lived out of province. Dr. Bechara studied in Japan, where the procedure was developed, and had a success rate of 100% from 100 patients that he’d done the operation on. Contrasting to how nervous I was, he seemed to almost be bored. In fact, the day I had my operation, he had another person getting it too. So, he’s a total expert. Do ask your doctor how many operations they’d done and if they had any complications, if nothing else it’ll put your mind at ease.
Three days before the operation I was on a fully liquid diet, which isn’t bad but really drains your energy. All I wanted to do was lay in bed and watch TV, so don’t plan any marathons. The morning of the surgery I was put on IV and right before the surgery I was knocked out and put on anaesthetic. All I remember is the count down, and the next thing I knew I was coming to in the post-op room. At first the anaesthetic was still working so I felt sleepy but great. As it wore off though, I started feeling a pain in my chest. Getting up was out of the question for at least a few hours, but they gave me a fantastic pink numbing liquid (Lidodan 2%) which worked wonders. I was pretty much bedridden for the next three days, and had almost no energy for anything. So take that week off work is my advice.
This pain remained for about three weeks, and, I’ll be honest, it really sucked. At first it was a constant dull pain that inhibited my breadth of movement and would only be subdued by the pink stuff. After about a week the pain became acute, which was worse. I would feel almost totally fine, and then this sharp stab would suddenly come on and I had to lie down wherever I was; always have your pink stuff (or Tylenol) on hand. I thought these was the spasms some people wrote about in blogs and was afraid it wouldn’t go ever away. I definitely had thoughts that this wasn’t worth it, and I should’ve just lived with the swallowing issues rather than inhibiting spasms. BUT, the pink liquid was awesome and it would calm the pain in about 30 minutes, and it did go away after three weeks. It became less and less frequent, and now totally gone. The pain is not that surprising really, they put a 17cm incision inside your body – its gonna hurt. After a week after the surgery I was able to work just fine.
Right now, two months post-surgery, I feel so incredibly grateful that I had the operation done. I can eat all my favourite food not only without throwing up, but with consuming only a small amount of water (often not even necessary). I’ve started feeling thirsty again, can eat until I’m full, and have finally started regaining the weight I’d lost. If you have a chance to do this operation, do it. And I would highly recommend Dr. Bechara if you have the opportunity. Good luck, and don’t give up hope!

Interested in more discussions like this? Go to the Digestive Health Support Group.

I am getting ready to possibly have the surgery and I am quite afraid. While I don't have what I consider swallowing issues I do have severe G.E.R.D. If I lay down sometimes my food comes right back up. I have terrible heartburn almost all the time. I have found out that flour is really my enemy. The main reason I am so afraid about the surgery is that they might not correct the issue and the pain afterwards. I have read so many reviews and none have been that good. Any assurances would be great. Some positive feedback would really help me. Any good advice also.

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@patriciashort

I am getting ready to possibly have the surgery and I am quite afraid. While I don't have what I consider swallowing issues I do have severe G.E.R.D. If I lay down sometimes my food comes right back up. I have terrible heartburn almost all the time. I have found out that flour is really my enemy. The main reason I am so afraid about the surgery is that they might not correct the issue and the pain afterwards. I have read so many reviews and none have been that good. Any assurances would be great. Some positive feedback would really help me. Any good advice also.

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Hi Patricia:
Have you been diagnosed with achalasia and is the procedure you are having a POEM?
Margaret

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@patriciashort

My gastro dr is recommending I get POEM surgery due to the issues I have. I am scared. I don't have weight issues nor do I have swallowing issues. I have gerd pretty bad and if I lay down my food comes back up. Stuff like that. Having read some reviews for after surgery makes me even more hesitant. Pain for example and months of it. How long does pain last? Will I always be on a soft diet? Any information you can supply me with will really be helpful

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@patriciashort I have never had the surgery so cannot answer your questions. I would suggest you do a search of this site using the search function.. it looks like a small magnifying glass up above this post to the left of where the word APPOINTMENT is. There are several discussions about it.

In my opinion if you are not comfortable with your gastro doctor's recommendation of having POEM surgery I would get a second opinion.

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My gastro dr is recommending I get POEM surgery due to the issues I have. I am scared. I don't have weight issues nor do I have swallowing issues. I have gerd pretty bad and if I lay down my food comes back up. Stuff like that. Having read some reviews for after surgery makes me even more hesitant. Pain for example and months of it. How long does pain last? Will I always be on a soft diet? Any information you can supply me with will really be helpful

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Hi @patriciashort,

Welcome to Connect. Here is some detailed information about peroral endoscopic myotomy (POEM): https://www.uptodate.com/contents/peroral-endoscopic-myotomy-poem

I’m tagging a few fellow members who have talked about reflux, achalasia and POEM – please meet @craig7 @dandl48 @ed32 @ed_85 and @kozlo52 – I hope they will be able to offer more insight.

@margaretmary asks a very good question; typically POEM has been endorsed as a primary treatment for type I and II achalasia, but it is increasingly being used to treat other gut disorders as well. May I ask if you’ve tried other therapies to relieve the GERD?

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I see this is an old post but i am hoping someone can help . My dad had tried to have the poem surgery last week but the surgeon injured his esophagus and had to stop. They put a large cut in his throat to go down with a camera . He is still having a lot of bleeding and has so many questions , but doesn’t know where to turn . If anyone had similar issues please reply. Thanks

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@margaretmary

I had POEM surgery 1/18/19 so I’m five days post op. Mine was performed at RWJ New Brunswick NJ by Dr Kahaleh. As posted by a another contributor I too had not heard of achalasia. I thought I had reflux until the swallowing difficulty began. To confirm the diagnosis, I had a barrium swallow test, endoscopy and esophageal mynometry. With a confirmed diagnosis I had the POEM. Yes the disease is rare but Dr. Kahaleh and his team were very matter of fact about it. He showed me a video as to how the procedure was informed. I am grateful that unlike some other patients I had zero pain post op with the exception of a sore throat which lasted three days. Hardly worth mentioning. I am weak and tired from the post op dietary restrictions. I have completed my three day clear liquid and have begun full liquids today which introduces dairy. A struggle for me. I tolerate low dairy intake so I’m working around it. In three days I’ll begin a soft diet which greatly increases food choices and I’m looking forward to it. I took a week off from work. It’s necessary. Energy lacking from the limited diet. I am taking a proton inhibitor as prescribed for reflux and supplementing with an antacid. I follow up in one month with the doctor. So far so good. Even though I’m only consuming thickened liquids at this point I am swallowing normally. Wonderful!

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Switch to unsweetened almond milk which is non dairy and Tastes great.

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@corilee21

I see this is an old post but i am hoping someone can help . My dad had tried to have the poem surgery last week but the surgeon injured his esophagus and had to stop. They put a large cut in his throat to go down with a camera . He is still having a lot of bleeding and has so many questions , but doesn’t know where to turn . If anyone had similar issues please reply. Thanks

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Hi @corilee21, welcome. I'm sorry to hear that you father is still experiencing a lot of bleeding. I'm tagging fellow members @margaretmary @jenniferb @dstb83bb @franduffy @addiquijote and @patriciashort in the hopes that they will return to help answer some of your questions regarding POEM surgery.

Has your father considered a second opinion? What questions do you have?

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@colleenyoung

Hi @corilee21, welcome. I'm sorry to hear that you father is still experiencing a lot of bleeding. I'm tagging fellow members @margaretmary @jenniferb @dstb83bb @franduffy @addiquijote and @patriciashort in the hopes that they will return to help answer some of your questions regarding POEM surgery.

Has your father considered a second opinion? What questions do you have?

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Hi I’m so sorry to hear this ...I had no problem with the surgery itself , therefore unable to help . I do hope he heals soon . Good luck !

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@colleenyoung

Hi @corilee21, welcome. I'm sorry to hear that you father is still experiencing a lot of bleeding. I'm tagging fellow members @margaretmary @jenniferb @dstb83bb @franduffy @addiquijote and @patriciashort in the hopes that they will return to help answer some of your questions regarding POEM surgery.

Has your father considered a second opinion? What questions do you have?

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Hi Corilee, I'm very sorry to hear of the mishap during your Dad's attempted POEM. I had a successful uneventful procedure in January 2019. Will there possibly be a healing period for your Dad and then another attempt? An FYI, there is a percentage of POEM recipients who develop reflux post op and I happen to be one of the lucky recipients.
I have been battling it for quite some time and I developed an esophageal ulcer and was placed on mega doses of pantoprazole to heal the ulcer. I remain on 40 mg daily. I've made all dietary adjustments to combat it. My surgeon recommended I have a TIF (fundoplication) but after having read all the experiences of failed and slipped TIF'S on Mayo Connect I have no plans to do so. Anyone out there who has had a POEM and now suffers with reflux? . Would appreciate hearing from you. Corilee, my best to your Dad and hoping a resolution is on the horizon.

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