Two Months After 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!

@jenniferb

@margaretmary Hey Margaret! He did not have any other procedures. As soon as he was properly diagnosed, his POEM was scheduled 8 weeks later. By the time he went in, it was so bad that even water was causing bad pain. It was even coming back up. The day after his surgery, they did the swallow test. There were no leaks. The Barium went down, but not all of it. Some of it sat there still. However, the doctor said my husband's esophagus had a twisted shape now, due to the advanced state of Achalasia. This is his 3rd day after surgery. He is able to get down liquids, without any coming back up. However, he got pain with a smoothie (no chunks). He doesn't know if it is due to the surgery site, or if stuff was beginning to back up again. He did say it felt like it was backing up. We are so worried it didn't work.

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Hi Jenn: My hope for him is that the POEM was successful. He is getting liquids down and of course that is wonderful news. He may want to take his time with the post op diet by extending his clear liquids a day or two before going to full liquids, then soft diet and then regular diet assuming that is the protocol. I highly recommend bone broth. I drank so much of it while on the liquid diet. It was soothing and has 8 gr of protein per cup. You can reach out any time if I can be of help. I do appreciate these discussion forums because it gives even those of us with rare conditions a chance to connect and compare our experiences. My continued best wishes.

Liked by dstb83bb

@margaretmary

And I will do the same for you. Was he released from the hospital and what is the recommended next step?

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Yes he was released. Not very good post op instructions. Just to be on a soft diet for 3 days. He's been on it for about a week. Everything is going ok with oatmeal and stuff. However, when he tried to eat a banana it hurt pretty bad.

@jenniferb

Yes he was released. Not very good post op instructions. Just to be on a soft diet for 3 days. He's been on it for about a week. Everything is going ok with oatmeal and stuff. However, when he tried to eat a banana it hurt pretty bad.

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Hey Jen. I had to mash my banana. He is healing. I hope he continues to progress. Hoping for the best. Margaret.

@margaretmary

Hey Jen. I had to mash my banana. He is healing. I hope he continues to progress. Hoping for the best. Margaret.

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Is there any way we can chat? How can we get each others info without making it public? I have so many questions.

@jenniferb

Is there any way we can chat? How can we get each others info without making it public? I have so many questions.

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I would love to chat with you. Maybe one of the advocates with Mayo would be willing to facilitate.

Liked by jenniferb

@hopeful33250

Hello @margaretmary and welcome to Mayo Connect,

I am so pleased that you posted about the good results from your surgery. I hope your progress continues to go well.

Was the swallowing problem the main symptom you had prior to surgery or were there voice problems as well (like hoarseness)?

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Hi Teresa. You communicated with me previously when I posted my POEM experience. I have been communicating with @jenniferb and she has requested to chat with me privately. How can we do that without posting our contact information on this discussion forum. Thank you for your assistance.

Liked by jenniferb

@margaretmary

I would love to chat with you. Maybe one of the advocates with Mayo would be willing to facilitate.

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Actually, look me up on FB. Jennifer Blamy. Profile pic is of my husband and I. Send me a message on there and then I can give you my contact info.

@margaretmary To send a personal message .. click on the envelope at the top right of this page; Click compose towards lower left of page; type in user name you wish to contact.

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@fourof5zs

@margaretmary To send a personal message .. click on the envelope at the top right of this page; Click compose towards lower left of page; type in user name you wish to contact.

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Thank you.

@jenniferb

Thank you.

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Jenn, I'm not on facebook. I sent you a private message with my cell #. Margaret

Thank you for sharing. I just had a P.O.E.M. Procedure done. I wasn’t offered anything for pain. I’ve taken Tylenol but my first two days at home the pain wasn’t bad. Third day home and I get that stabbing pain I had before. It happens when I try to swallow. I was encouraged ( sorry) to hear you had pain. I guess I thought there would be no pain after a few days. So reading your account was encouraging.

@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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@margaretmary thank you for your post. How are you doing now? I just had poem 3 days ago. I am experiencing some pain when I swallow. I am hoping to move to liquids with more choices.

@dstb83bb

@margaretmary thank you for your post. How are you doing now? I just had poem 3 days ago. I am experiencing some pain when I swallow. I am hoping to move to liquids with more choices.

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Hello. I am doing very well. Thank you. Initially swallowing had some mild discomfort for me as well but the healing process takes a bit. The post op diet was most challenging to me because it was so limited and I felt so weak. Once you begin consuming soft foods you will begin to feel better. Returning to a normal diet and not having to consume mass quantities of water just to get the food down was a welcome change. POEM was an instantaneous restoration to my quality of life. I put on a few welcomed pounds. I went into surgery a bit underweight. I saw my surgeon for follow up and will have a routine endoscopy in April which is about two months post op and then yearly thereafter. I hope you continue to improve and feel stronger. Please let me know how you’re progressing. Good luck and good health.

@dstb83bb

@margaretmary thank you for your post. How are you doing now? I just had poem 3 days ago. I am experiencing some pain when I swallow. I am hoping to move to liquids with more choices.

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I thought I was home free because the first 3 days I had very little pain. However the next day the pain started when I swallowed and sometimes just moving the wrong way. I was afraid I might have knocked a clip loose until reading about others pain here

@jenniferb

I am so happy this POEM procedure worked well for so many. I am sitting here next to my husband. He just had the procedure. He would be released fr his overnight stay in the hospital here soon. Just like everyone else, my husband was diagnosed with Gerd. He knew this wasn't the case, that he was dealing with a type of mobility issue. He is only 34, so doctor's stated that he was too young for Achalasia. It ended up progressing to Type ll. He lost 30 pounds in a few months. Prior to the surgery, he couldn't even keep water down. Even though he was on a liquid diet for days prior to the procedure, when they went in to do the POEM, they had to clear food from the esophagus. It had been sitting there for over 3 days.

We are hoping and praying that this procedure helps him be able to live again. However, upon going down and doing the Barium Swallow, they stated that some of the liquid was still sitting at the bottom of the esophagus. Has this happened to anyone else? We are terrified it didn't work. His esophagus is twisted and turned now, due to the ongoing condition. The doctor said it is "bag like", not a straight path. Has anyone else had the Barium not go down all the way, but had success with the POEM? If so, please let me know. We need some sort of hope!

Also, he felt pain upon drinking a sip of water. I am hoping this is because of the surgery, not the same pain he was getting. All feedback is appreciated!

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@jenniferb my heart aches for your husband. I am 63 and have suffered for years. When I was in my 30’s I stopped swallowing- lost 30 pounds in one month. The doctors all told me it was in my head because they could see nothing wrong with my throat – no tests were done! Thank goodness for medical advances. I was diagnosed with jackhammer esophagus this go round. I had the POEM procedure last week. 3 days post op I thought I was home free. Not the case now! The pain is pretty bad when I swallow! But I can feel a difference in my chest – I am hopeful no more esophageal spasms. I am going to add your husband to my prayer list. I know how difficult it can be.

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