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Achalasia and Hellers Myotomy Operation

Posted , 7 users are following.

kathy82501
kathy82501

Hi, I was diagnosed with Achalasia after a long time of bring up food undigested.  Nothing worse than being taken out to dinner and making a fool of yourself in the restaurant by vomiting your dinner as you are eating it.  It got so bad that I could get no food into my stomach, not even liquid and I was throwing up in my sleep even though I banked myself up on pillows. I lost a horrendous amount of weight very quickly. Dr sent me to hospital where I had all the tests and Achalasia was diagnosed.  I had the Heller Myotomy operation on 10th March and was not given any information whatsoever so I am trying to muddle though. In the hospital 14 hours after the operation at 4.45am , I woke up in the middle of the night in so much pain I cried. I couldn't breathe as each time I breathed in I felt like i was being stabbed. I called a nurse who told me she needed to get a dr quickly. An hour later I called for the nurse again to be told that she needed to get a dr quickly !!!  I was left in this pain until 8.30am when the ward round happened. They said I may have a blood clot on my lung and needed to do a scan urgently (I had been like this for over 4 hours). Thankfully it was air on my lung after the operation and they hoped it would disperse itself. I hadn't even been told that there would be several incisions for this operation.  For food in hospital, I was given roast dinner, baked potatoe etc iimmediately despite the fact that I was supposed to be on clear fluids though I didnt know this as I was on morpheine and didnt know my own name. I found out I was not supposed to eat what they gave me when a nurse asked my why I was eating a baked potato when I had 2 mouthfulls left and informed I was supposed to having only clear fluids. Obviously the pure apple juice they were giving me was a no no also.  This treatment continued until I was discharged a week later. My discharge letter says I had had physiotherapy for my lung which I didnt and the surgeon at the ward round told me I would be seeing a nutritionist so I would know what I can and cannot eat when I went home.  This also did not happen. I was supposed to have a follow up appt with the surgeon 6 weeks after the surgery but that did not happen either.  I am not a happy bunny to say the least.  

It is now 8 weeks after the operation and I am still having a lot of trouble with food and wondered if anyone else has found the same thing? i dont know if its because I was given no information and perhaps what I was trying to eat set me back in recovery?  I have learned though experience that if I eat little and often I dont get into as much discomfort but there are only so many bowls of jelly and toasted ham sandwiches a person can eat before you feel sick just thinking of them!!!!  What should I be able to eat by this stage?  One good thing is that I have not brought a single thing back up when I have eaten which is wonderful. Where food is concerned, there are so many things I cannot eat like cheese, fish, salads, eggs and I cannot drink milk except for a little in tea.

 I tend to have pain in my chest just under my breats bone most of the time. Its not so bad if I just sit but as soon as I try to move around back it comes. Its a deep pain that drains me.  Is this happening to you also?

I also suffer from IBS and since the operation, each time I eat the food goes straight through me immediately.  I am thinking its because of the operation and that it will settle at some point.  Anyone else had this problem?

If anyone has had this surgery, please could you help me?

1 like, 13 replies

13 Replies

  • bill87487
    bill87487 kathy82501

    Posted

    Hi Kathy      I have Achalasia, I an 83 years old, Have 5 Botox injections they last for about 9 mos. I an due for another injections, they work for me. I am sorry you have had such a problem, I will not have the Heller Motomy due to my age. I wish yoy good luck    Bill
  • Aqua-Man
    Aqua-Man kathy82501

    Posted

    I have not had mine done yet...but you are first person I have spoken with that has aspiration issues too.

    I am getting real close to breaking 100 lbs again and about to redo my tests to get the surgery.

    I am scared after reading your nightmare situation, I am very thankful you survived. 

    I have found this forumn to be very enlightening and especially after reading Bill's message...83 years old???For Real!!!That is a game changer for me Bill.

    While your operation seems to have been the worse I have read so far...I did enjoy your positive outlook about keeping things down.

    I will keep my fingers crossed for your improvements. God Bless you and Bill.

    Another factor that might help is you being home with your loved ones...

    Thanks for sharing your experience...I have met many wonderful people here.

     

    • bill87487
      bill87487 Aqua-Man

      Posted

      Hi Sean,  I think you have confused with someone else, I feel sorry about some of the cases I have read about.   My surgery is very simple, you are under and feel nothing, a tube is inserted down your throat, when it reaches the doughnut shaped muscle  4 injections are made  example  north south east and west, Botox will relax the muscle and allow food to enter the stomach normaly. as I said they frown on Heller myotomy at 83 years old. this proceedure will last me about 9 mos to 1 year   hope this helps     Bill
    • Aqua-Man
      Aqua-Man bill87487

      Posted

      I was just impressed that you reached the ripe age of 83 living with achalasia...I have just now encountered the wall that many on this forum are reaching at a much younger age in their teens and 20's.

      I know I was able to reach the weight of 220 lbs...by ignoring medical help and eating as much as I could while I could. I knew I was dying of something..just did not want to know.

      But whenever I have a very very very stressful event happen...I have severe achalasia attacks...

      I do NOT believe that surgery will solve every problem...no offense doctors. But their are natural ways that work. Or should have options.

      I cannot help but wonder why we all seem to have similarities to certain types of foods and drinks.

      Kathy brought up 2 other items that also work for me...ham and jelly...

      While she does not have the milk trick working for her.

      I believe that we could create a Achalasia Spa Resort that uses Natural methods by eating and drinking and not just surgery.

      It would seem logical that if those muscles are not working properly..that you would exercise them with natural methods.

      If enough of us got together and connected the peices..I would like to believe this disease CAN be cured by just food and drinks.

      Thanks for clarification of your botox and a Heller's surgery...they want to do Heller's on me..and I have agreed..but the more I fight this with different foods and drinks..the more I think that will be bad idea.

      My reasoning is that I did reach 220 lbs..and you reached 83 years old...

      We seem to have defied the laws...the problem seems to be compounded once you cross a threshold..and your muscles stop working properly..if I could pump you up with food and liquids..I bet the problem would reduce to minimal..attached are some 3-D renderings of the facility I wish to build here in Texas..I have only begun the design process and will update as I get more detailed.

    • kathy82501
      kathy82501 Aqua-Man

      Posted

      Ham and jelly worked for me after the Hellers Myotomy operation but before this I got to a stage that I could not even keep liquids down so being able to have ham and jelly is a big step forward.  I think I am going to look like a toasted ham sandwich though!!!

      Sean please do not be put off having the surgery from my post. The treatment in the hopsital I was admitted to is famous for being really really bad, in fact I have heard nightmares from people who have been inpatients there for all different sorts of surgery.  I think if I had seen the nutritionist as I was told I would, I would probably be a lot better than I am now. Its the not know what I can eat and cannot eat is the problem. I have found though that eating little and often is a lot better than trying to eat one large meal.

    • Aqua-Man
      Aqua-Man kathy82501

      Posted

      Thank You for the response Kathy!!

      I am in a bad position because I will only let someone cut me up if I am dying...so I will try anything but surgery..

      It just seems like it will only last for a short while..I do not have much more weight to lose.

      But since I am going to die if I do NOT. I will do it..that was the deal I made with myself and family.

      I am glad to hear you are learning the liquid diet..full liquid diet..puree..and solids terminology. But I would agree with the other comment about still going for a big solids meal now and then for Dinner.

      I lately, find better success taking just 1 pain pill at night and exercising before the meal..it makes me hungrier than you know..no punt intended.

      But the energy that will flow through your vein if you can keep one bite down will get you to expand above the baby steps that you MSUT take after surgery for 6 weeks..Then one day get your biggest most favorite meal and eat it period. You earned it..whenever I come out of Hospital I splurge too...it is O.K. I have spoken with Jesus personally..he forgives even sinners like me.

  • Mish221
    Mish221 kathy82501

    Posted

    Hi Kathy, I had the Hellen Myotomy with partial fundoplication 10 years ago At Barnes Jewish Hospital in St Louis Missouri USA. Everything went well, no major pain, no complications. I didn't want a liquid diet because I so badly wanted to see if I could eat....it had been so long! I was excited to be able to drink water though, because before the surgery I couldnt. I don't know why you are havi NH the complications but I also don't know anything about the experience of your doctoR. I still have food get stuck but my nifedipine helps that and the chest pains. Otherwise, MY surgery was mostly successful. I am going back to a GI doc currently who is sending me to a renowned specialis IN Tampa Florida USA. Dr Richter hopefully can help my chest pains. But since the surgery I have been regular weight and sometimes even over. I sure hope you can see ax experienced doc to get better.
  • Mish221
    Mish221 kathy82501

    Posted

    I apologize for my above typos....I am trying to type from a new phone smile
  • kathy82501
    kathy82501

    Posted

    I am just trying to find out what to eat and what not to eat in the weeks after the operation
  • monica1676
    monica1676 kathy82501

    Posted

    I just had my surgery Heller Motomy on Monday (May 2, 2016) discharged the following day. On a soft diet and no heavy lifting for 8 weeks due to stomach stitches from the air they pumped into me. I also suffer with stress induced Crohns. First night I napped in my husband's recliner as all they told me was one extra strength Tylenol as needed. The heat searing pain on my right side from neck to stomach was unbearable. I Take one T3 to sleep. Can sleep in a bed 2nd night home. Using an anti-inflammation cream for topical pain. Have been swallowing fine, however after 6 years of not swallowing properly I am still hesitant to swallow at times. Crohns in check. Will see how it progresses and if my next dentist appointment in June means less suction, then I'll be thrilled. There are foods I think I will always avoid, just to be safe. It will be a long time before I try medium spicy food (my natural tollerance-all lost due to achalasia) again or water with ice. Sitting up is better than lying down. I am sorry you don't see improvement. Botox was not an option for me. I was the most severe case of my specialist's non child/non cancer patients he had seen in awhile. Still took 3 years to get surgery. Canada's waiting lists are too long.
  • celeste3756
    celeste3756 kathy82501

    Posted

    Hello my son is 13 and has dealt with achalashia since birth. My entire family suffers from it so as much as drs. Disagree, I'd say it's hereditary. My son has been the only one who actively vomited food stuck in his esophagus. Also had reoccurring egg burps for years. We were talked into the laparoscopic heller myotomy with partial dors fundoplication. There were unforseen issues that lead to it being an open heller myotomy (huge hiatal hernia not noticed on all the many tests, scans, shallows) plus his esophagus was very inflamed, fragile and scar tissued from years of food eroding it. Well he was in the hospital for 8 days 7 of which he had an ng tube on suction to remove all stomach juices and was not allowed food or water. Once discharged he has had nothing but severe cramping and diarrhea. Similar to ibs symptoms. I think it's called dumping syndrome and I have read extensively on it but so far have been very unsuccessful in treating it. I did see someone used gas x for cramps and diarrhea I might try that for him. I am desperate to remedy this its life altering so far. His surgery was May 2, 2016 so maybe it's a temporary issue. Plus I will say, not to be gross, but what comes out of him doesn't look normal. Gray and floats like putty. No smells. It's very strange.
  • arteya_84531
    arteya_84531 kathy82501

    Posted

    Hello everyone,

    I have just had the Heller Myotomy with fundoplication and am in pain. I am 2 days post-op and have suffered a long time. Im on a liquid diet but don't even care to have anything. Are there any suggestions to help me keep from getting dehydrated. I don't want broth and jello seems too heavy.

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