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3 months post heller myotomy and toupet fundiplication

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Posted 8/20/2013 6:47 PM (GMT 0)
Back in May I had a heller myotomy with toupet fundiplication to help with the symptoms of achalasia.  My recovery has been a roller coaster ride to say the least, but I am getting there.  The thing is, my surgeon nor my GI doctor told me what to expect with the recovery or how long the recovery will take.  I am flying blind in this recovery and I feel like that is causing more anxiety then what needs to be.  It has been three months and every time I eat I feel like someone is pressing a foot on my chest and I get bloated.  Is this normal?  Also, on occasion I also have bouts of reflux at night.  I never had reflux problems before this surgery.  Another problem is I feel like liquid is pooling up at the LES muscle after taking pills in the morning or drinking water and I feel like if I bend over the liquid is going to come back up.  Is this just part of the healing process?  Can someone help me figure out what to expect and how long will it take for me to feel normal again?  I know it is a lot of questions, but I really need some direction on the whole healing process, stage by stage if possible.  :-)
Posted 8/20/2013 7:03 PM (GMT 0)
4Griffins

Welcome to Healing Well.

Yes it is very possible that food, pills, or liquids are sitting at the wrap area. For this try drinking something warm a few minutes afterwards. This will help relax the wrap area and flush what's left through it. When stuff sits there it can ferment and feel like reflux.

With this type of surgery we have to remember our insides went through major surgery. It takes about 6 months for about 80% of the healing and the rest happens during the next 6 months or so.
What you are experiencing is part of the recovery. Usually somewhere between 2 to 3 weeks the wrap area hits peak swelling and them gradually goes down from there. Everyone is different so there is no set time for the swelling to go away. Irritation from food or nausea or over cold or hot drinks can cause the swelling to continue.
Eating small frequent meals helps along with making sure to chew very well. To a liquid if possible. Depending on what you have been eating you should be able to add in solid meats now, but small bites and chew, chew ,chew. also wait about 30 seconds between bites to be sure it goes through the wrap. Drinking something will help it along.
If your wrap feels irritated, and it seems to be, back off your diet some like eating very soft foods or full liquids for a day or 2 and see how it feels. Unfortunately the surgeons usually don't have a full grasp on what this recovery is like since most have never been through it themselves. This recovery is like a marathon, not a sprint.

Would you mind telling us what your diet is like right now?

Take care,
Bill
Posted 8/20/2013 7:34 PM (GMT 0)
Thanks for your quick reply. This has made me feel better. The surgeon released me to be able to eat and drink anything, but I don't. I only drink water and I only eat 1/2 of the portion size that I used to. I still stay away from "trigger" foods or foods that should cause problems. Like I said, I could eat anything before without issue so it is weird for me now to try to figure out what to eat. I am taking advantage of the lack of appetite so I am doing weight watchers now. I eat a lot of their meals...just not the ones with marinara and acidic stuff. I chew my food very well but it still seems to cause bloating. The bloating and the pooling liquid is my biggest concern.
Posted 8/20/2013 8:04 PM (GMT 0)
4Griffins

The bloating is a common issue that usually resolves with time, but some have had some good results with things like beano or gasX. Also try to stay away from straws. They add air into your belly. With the wrap we can't fully belch as we used to so it has to go out the other end causing bloating.

Take care,
Bill
Posted 8/23/2013 6:39 PM (GMT 0)
Crazy question...but do you ever get to the point where you don't even feel like you have had surgery. Like now I am aware and feel it all the time. At what point do you not feel anything and just feel normal?
Posted 8/25/2013 3:12 PM (GMT 0)
Hi 4Griffins, I have motility problems myself, may I ask what problems you had before the operation? I'm sure that it will take time for you to heal, you have had a highly invasive operation, and it will take a long time to settle down. Hope that you feel better soon!
Posted 8/25/2013 4:49 PM (GMT 0)
The only issue that I was aware of was that I felt like food was getting stuck in my esophagus. I was blessed not to have all the other symptoms of achalasia. I had no idea U had motility issues until after my manometry. I must have just ignored it. I found out after my endoscopy that U had bile reflux too, but I didn't know it because my LES was so tight that if nothing could get down, then it couldn't get up. Now I had the heller plus toupet I am super sensitive to everything that is going on and feel everything. I think a lot of it is my anxiety and in my head.
Posted 8/26/2013 7:10 AM (GMT 0)
4Griffins

Yes you do get to a point you don't feel like you've had major surgery. It takes time, somewhere around 4 to 8 months, but you will get there.

Take care,
Bill
Posted 8/26/2013 7:51 AM (GMT 0)
4Griffins,

Thank you for the information. I'm sure you are sensitive to every bite at the moment, but you have had major surgery and it's going to feel strange I would imagine for a while. However, just think that you are on the way to recovery. Like Bill says, it takes your body time to heal, and time for you to adjust, then hopefully you won't be aware of any strange sensations at all.

Please keep us updated.
Posted 8/26/2013 11:19 AM (GMT 0)
Thanks everyone. I took Bill's advance and slowed it down a little and I am feeling a little better. I just have to remind myself to be patient. I definitely feel much better than I have in the last couple of months!!
Posted 9/2/2013 3:11 PM (GMT 0)
Hi 4Griffins,

May I ask how you were diagnosed with achalasia? I am struggling with LPR, swallowing and motility problems, it feels like an elephant is sat on my chest and that food is not going through my sphincter although I have a low pressure at the sphincter due to a HH and the damage it has caused, I also suffer from oesophageal spasms so I'm in a bit of a pickle. My gastro doesn't know if it's the acid reflux causing the spasms or the spasms are the primary problem - if the so called experts don't know how on earth am I supposed to?
Posted 9/3/2013 1:39 AM (GMT 0)
My first test was an endoscopy. The GI doc had me do a barium swallow and a manometry (worst test ever!) to rule out achalasia. Unfortunately that is exactly what I had.
Posted 9/7/2013 8:29 AM (GMT 0)
Hi 4Griffins,

How are you doing now? Are you managing to eat some more solid food yet?

May I ask if your radiographer diagnosed you with achalasia, and what did your manometry show - did you have failed peristalsis?

I am really struggling with fluids and solids and chest pain, it feels to me that fluids and food get stuck in my gullet, but on my manometry I was having a good day, and it only showed 1 small episode of spasms. My barium swallow shows tertiary contractions on lower 3rd of gullet and the fluid not moving down well and pinging back and forward.

So is it achalasia or gerd causing it - I'm getting so very tired of the pain. 

Posted 11/14/2013 9:34 PM (GMT 0)
I am so glad to find this thread. Thank you Google! Anyway, my husband was diagnosed with achalasia in September, had 2 dilations which didn't help, and on October 21 had the Davinci Heller myotomy. He was able to eat some mashed potatoes for a day or two, then his esophagus just seemed to close up again. After a barium swallow on 11/4 showed a very narrow opening, tighter than an hourglass, he had a third dilation last Thursday. We were so hopeful, but still he can't get any food down, and the only liquid that he can get to go through is bourbon & coke (at least he's staying hydrated, but not the ideal solution). Last Friday, the surgeon told me that there wasn't anything else he could do, he thinks the esophagus just quit working, and basically said that we might look into a feeding tube. He said that he only did the wrap at 180 degrees, so there wasn't any loosening of it that he could do, and the way he did it it should hang open. So, I was able to get him into UT Southwestern Digestive Disease clinic for a second opinion, with an appt. in early December. From what I've read here, there might still be swelling in there that hasn't gone down yet. None of these doctors have said anything like that, so I'm really glad to have found this. The gastro doctor that referred him from surgery called him today and told him that yes, the surgeon could go in and remove part of the wrap. We really want to get the second opinion, but don't really know what to do. I hate seeing him not be able to eat, and having to expel everything out of his esophagus. Are we just being to quick to expect results?
Posted 12/11/2013 9:26 PM (GMT 0)
Lascott - I apologize that I somehow missed your post in November. I have not been up here at all since September. I wanted to check back in with you to see how things were going with your husband now. I would like to give you advice, but I am learning as I go too. All I know is it has been an extremely slow process for me...I am 7 months post op and I am still questioning whether the things going on with me are normal!
Posted 10/14/2014 4:48 PM (GMT 0)
Is anyone still around to answer questions about post Heller Myotomy expectations? I had surgery in September and have had a very slow recovery. Just wondering if this is normal and what to expect from here.
Posted 10/14/2014 5:38 PM (GMT 0)
Hi Gracie,

Hope that you are feeling better now than before the surgery. There is a group on Facebook for achalasia and you might get a lot more information on there from people who have this rare condition.

I don't think there are many on here who have achalasia there are also some groups and forums on Yahoo.

Hope this helps,

Pink
Posted 10/14/2014 5:48 PM (GMT 0)
Hi Graci! I actually had a heller myotomy in May, 2013. I came on the board to get answers too. Unfortunately the disease that we have is so rare not a lot of people can help us out. But I have been where you are and all I can tell you is that it does get better. I promise, even though it doesn't seem like it now. What the docs don't tell you is that it is a long road...not the two weeks they expect you to bounce back. My swallowing has been great ever since the surgery it's all the other things you have to get used to. Like the reflux...oh my goodness that was definitely different than what I was used to! If you have specific questind don't be afraid to ask. I don't have a medical degree but I have been through it and maybe I can ease some worries. Sometimes just knowing someone else went through it too helps. Just let me know what issues you need info on!
Posted 10/14/2014 5:59 PM (GMT 0)
Hello 4Griffins & Pink! I'm on week 6, now, but the recovery has been slow go - I had fever 4 days post op, swelling issues, weight loss and most recently what they think is esophagitis from candida?!?! I loved the comment about flying blind - that's exactly what I feel like. There's just not real like information about what we have, which is so frustrating! Did you ever have chest pains? I assume these are from the esophagitis or swelling? I'm very hopeful that the outcome will be worth everything - I certainly don't want to go back to where I was pre-surgery!!! I'm going to check FB for the achalasia group! Thanks to both of you!
Posted 10/14/2014 6:11 PM (GMT 0)
If I could give you any advice whatsoever...say off the internet. It will scare you to death. I tried to read so much after my surgery I had a panic attack. And none of the stuff applied to me...but I convinced myself it would. I never had the chest pains, but a woman that had it 2 weeks before I had mine done. Hers eventually went away or weren't as bad. You have to keep in mind that that area has been through some pretty tractor stuff so it is on high alert now. We have both bounced back now. In all honesty it took me a good year to get back to where I felt like I could deal with everything that went with the heller. But it was worth it, cause I never want to go back to where I was. 😄
Posted 10/15/2014 9:48 AM (GMT 0)
4Griffins,

It's great to hear that you are doing so well, I've been wondering about you!

I hope that you are able to eat most foods now, are you getting much reflux on a daily basis and did you have a fundoplication or a dor wrap do you know?

I hope that eating ant getting out and about has become more pleasurable for you.

All the best,

Pink
Posted 10/15/2016 3:41 AM (GMT 0)
Thanks to everyone who has posted here. Its a rare condition and info is hard to come by. I went to a Bariatric Specialist and even she couldn't (or wouldn't) answer all of my questions. I've never gotten a straight answer on how long it might take for me to get back to my old self. I think there are too many variables to give an exact answer.
I had the Laparoscopic Heller Myotomy and Fundoplication yesterday morning. My condition was complicated by an Epiphrenic Esophageal Diverticulum. That's a pouch that forms at the base of the Esophagus as a result of the Achalasia. It's kind of like a hernia but it captures and holds food that can't make it into the stomach. When I slept at night the food would be regurgitated up my Esophagus and into my lungs. It was not pleasant. That had to be stapled to seal it and then cut off. It was almost the size of a baseball. I was impressed when they told me it was the largest they've ever seen.
Incredibly I was discharged from the hospital this morning, less than 24 hours after the completion of the surgery. I feel like a new man! I can actually eat! The food goes down my Esophagus and into my stomach and it doesn't come back up! Sure it's only Farina, jello and pudding but that's a major improvement over what I've been eating. I was able to take a two mile hike in the woods with my dogs with very little discomfort. The only thing I've used for pain is a little Motrin. I'll be on a liquid diet for a while but it's something I've been on for a while now and I'm used to it. I feel good and I'm fairly certain I'll have a relatively quick recovery.
I hope this cheers up the people who've been worried by some of the stuff they've been reading on the Internet. THERE IS A LIGHT AT THE END OF THE TUNNEL. You can make a complete recovery from this and your odds are very good. Just make sure you choose a good hospital and someone who is an expert in the field. I went to a major University Hospital and a Doctor who specializes in Bariatric Surgery. She has a wing in the hospital just for her patients. She told me that this condition is so rare that she only does one a month. Most Doctors have never seen this.
Good Luck
Posted 5/30/2017 2:50 PM (GMT 0)
I also want to thank everyone for their posts on achalasia. This thread has been a source of comfort and reassurance for me, a 33yr old female.

I started having symptoms sometime in Dec 2015 or before....and was treated for acid reflux and GERD. My condition got worse during 2016 and in early 2017. I started seeking answers in January and ended up having my gallbladder removed. When that didn't resolve my issues I started exploring my symptoms and came up with this diagnosis. Through a series of testing that seemed to take forever I finally got my answers and just had a heller myotomy with partial fundiplication on May 17, 2017.

I know this is an OLD thread, but I want to post for any future lookers as this was so helpful for me. I got to the point that I was not keeping any food or liquid down and lost 60 lbs from January to my surgery date. I would literally throw up everything and my swallow study showed only a small tiny amount was getting into my stomach. My esophagus had been extensively damaged and stretched by my continuing to eat and drink as food would just sit above my stomach waiting to go somewhere (and most of the time it came up rather than down). I had a dilation of my esophagus done early on when I had an upper GI, that did not resolve my issues. I am 13 days post surgery and I feel relatively great. I woke up with immediate relief and the ability to keep ice chips and water down. I cannot tell you how AMAZING it felt to be able to drink water again. My first meal of jello, broth, etc was glorious!

I am still experiencing a lot of soreness at my surgery site and it took a lot more out of me than I expected. I am learning what I can and cannot tolerate in regards to eating. I found myself wanting to eat way more than I should as I hadn't been able to enjoy food in SO long. I am currently experiencing bloating and stomach pain following eating. I also wake up with minimal pain. I have been off the narcotic pain medication for 4-5 days and trying to manage pain with alternating over the counter naproxen, tylenol, and ibuprofen. I follow up with my surgeon on Thursday so hope to address the issue. When I spoke with the my surgeon's nurse about the bloating she said that was normal and recommended getting gas-x. That seems to help some, but I feel like I need to take them a lot! I also found relief with a heating pad and I use DoTERRA essential oils - basil and peppermint have been great. Also using Correct-X(which contains frankincense, helichyrisum, etc..) on my surgical scars and they are healing very quickly.

I just want to say I feel very relieved and hopeful for my future. Prior to finding the diagnosis I was starting to feel hopeless and like my body was failing me. I want to encourage any of you reading this not to give up and keep searching for answers. It takes a lot of tests to rule out things, but don't give out on the process and keep knocking down doctor's doors til you find one that will help you get to the bottom of your condition. Now that I can eat again, I am hopeful that my husband and I will be able to conceive and have a healthy pregnancy. Prior to this diagnosis and surgery we had been told that a baby would have to likely receive IV nutrition in order to survive. I'm grateful for God's timing in not allowing us to conceive prior to receiving surgery and a healthy recovery.
Posted 5/30/2017 3:56 PM (GMT 0)
Here's more good news Jenna. I'm now 6 months post surgery and I've made a complete recovery. I can do anything and eat almost everything I want. I've stayed away from ghost peppers but that's only a precaution on my part. My Fundoplication has loosened up a little bit and a occasionally get a little GERD if I eat late at night. There's a simple solution for that and I make a point of not eating after dinner. Other than that I feel great! Good luck in your recovery. I hope your result is as good as mine.
P.S. I'm a 68 year old male with 7 Cardiac stents and Type 2 Diabetes. If I can recover it should be a piece of cake for you. Just keep a positive attitude and you'll be fine.
Posted 5/30/2017 4:14 PM (GMT 0)
Thanks so much for the quick reply and encouragement. That is great to hear! It seems most items I've found online that people have posted indicate about a 6 month recovery time. So happy you've had great results! I'm thrilled with mine thus far, its just so WONDERFUL to eat again! smile Best wishes!
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