Connect
POEM Surgery for Achalasia
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!
Like
Helpful
HugInterested in more discussions like this? Go to the Digestive Health Support Group.
Connect
Just wondering why you had to wait 3 months before getting the surgery performed. That doesn't seem right when you had to live with all the discomfort already for so long. I am praying that I can get this surgery within a week, maybe two at the most after my initial meeting with the surgeon. I cannot lose much more weight, because it doesn't sound good for me if all I can have for 3 days before the surgery is broth and liquids. Not to mention afterwards, the same things for 3 days.
I met today with the surgeon who I was referred to, but he doesn't do the poem procedure. I'm getting another referral from my primary to see another surgeon who does this surgery and comes with high regard. There will be alot more travelling involved though, but he sounds like it will be worth that extra burden so I can get the best advice and care. Round trip will be at the least 2 hours. Interstate highway. I will just need the earliest appointments scheduled. This is my only option left.
@d13
I know how it is to get down to your only options with health. I am to the POEM stage yet. The past few days I have not been able to get food down, but can liquids. I have a call into Mayo in Jacksonville and they are suppose to call be back for a date for an endoscopy.
Please keep us updated on your progress.
ZeeGee
I've had all of the tests. There isn't a Mayo clinic in my state of Washington, but will be going to one of the best here in Seattle. It will be a 2 hour round trip each time I will be needing to go. The first step is getting the referral from my primary doctor. Just heard that it could take 2 weeks at the earliest for everything to get checked on. One of them being eligibility through my insurance provider. Then the doctor has to review my files and the tests that have already been done. So then I suppose there will be a consultation with him. Then hopefully a surgery date set up. Just feel that too much time has already passed when things should have been sped up with the doctors. Too much suffering is happening as a result of their impromptu actions. My feelings are such as; out of sight, out of mind! I do hope I like this doctor I'm supposedly be seeing
-
Like -
Helpful -
Hug
1 ReactionOk, you too. Take care. Better health for all.
Hi everyone,
I'm day 5 post-op from the POEM procedure. I just wanted to see if anyone has recently had the POEM that would like to share experiences. I am having a hard time on the liquid diet. I still can't swallow without incredible chest pain, which makes it hard to get in enough liquids throughout the day. Sleeping is also a challenge as I can't lay down without pain. I have to sleep on quite an angle. When does this get better? Can anyone else share their experiences?
I am on day 8 and am still having the chest pain. Drinking liquids is like swallowing razor blades at times. Sleeping is awful. When I get up in the morning the pain is so bad it’s hard to get up out of bed. My dr finally prescribed me the gi cocktail yesterday and that really seems to help. If you don’t have this try to get your dr to prescribe this
hi there,
What is the GI cocktail? I came home on nothing. No antibiotics, no pain medication, just children's liquid Tylenol. I can't say it's been fun 🙂 I'm just starting purees today ( Day 6 post-op) and it's hard to get anything down. It hurts so much. My portions are the size of a walnut! So if you had the name of that cocktail, I can call my surgeon's office and see if that would make sense for me. Hoping this gets better for both of us.
It’s actually called gi cocktail. It’s a mixture of lidocaine and mylanta or Maalox. I found maalox helps by itself a little. The procedure actually causes acid reflux and the acid is what’s making your chest hurt according to my surgeon.
Thanks for this! I'll ask my surgeon. I can certainly feel reflux all of the time. Very uncomfortable when I attempt to drink fluids, eat pureed food or lay down! The pain from the C02 insufflation during the procedure was awful the first 3 days I was home and now the pain is related to any eating or drinking I do from the reflux. Sure hoping this gets better. I struggled to eat prior to the surgery due to always feeling full and stretched. I also felt like I was having constant reflux, which was painful if I ever ate too close to bedtime, despite the PPIs I was on. So I'm used to some of this, just hoping for it to get better 🙂 The surgeons deal with the disease, but it's helpful hearing from others about their personal experiences.
-
Like -
Helpful -
Hug
1 Reaction