Living With Achalasia

Hello Everyone,

My name is Dr. Steve Horwitz. I was diagnosed with Achalasia at age 27 and have had dilations, failed Heller myotomy, and an esophagectomy with pyloroplasty in 2010 (at age 50). In addition, I was diagnosed with both gastroparesis and atrial fibrillation just prior to the esophagectomy. I have learned a great deal over last 5 years and have been able to make an amazing recovery from the esophagectomy and manage the gastroparesis and a-fib without medication or other treatments.

After sharing my story and my intentions with some incredible people in the Achalasia community, I decided to start writing a book on Achalasia. I now have the privilege of partnering with the Martin Mueller IV Achalasia Awareness Foundation, Inc. which is dedicated to Achalasia research.

In an effort to raise money for Achalasia research, I am offering my book as a free download!

In good faith, I ask that you donate to Martin’s foundation, a 501(c)(3) corporation dedicated to Achalasia research.

See his website: and click on Donations. Please spread the word to other groups so we can raise enough money to do proper research to find solutions to this difficult to swallow disease.

Living With Achalasia will be updated on a regular basis and the date will be shown on the cover page. Please send me your comments and suggestions and continue to share!

Click on this link * * to download Living With Achalasia. I hope this can help all of us on our quest for better health!

6 Replies

  • Thank you for the book download. I am going to donate something for the cause so to speak.

    I too have had the Myotomy and it failed in about 6 months and I too went on to have the Oesophagectomy (Ivor Lewis) in October, 2004. I have had several ongoing problems since then. Worst of all is the reflux which is very bad. I take Antepsin tablets 4 times a day before meals but been told that in emergency when the reflux is particularly bad I can take extra dosed of this tablet (it is huge) I cannot take the liquid form of this tablet any more as the manufacturers have stopped making it so I have to take these huge tablets which frequently gets stuck but there is nothing else that I can take and I am at the end of my tether with this. So where do I go from here? I will read your book and look for inspiration. Again thank you. Any help with the reflux right now would be welcome.

  • Hello,

    So sorry to hear about your reflux problems. I cover this in detail in the book. Please see that section first and then I am happy to discuss this with you.

  • Steve. I have read the chapter on Reflux from the book and what it said made me sit up and concentrate even more on reading this chapter. It offers me hope that one day there maybe some treatment on offer for reflux for Achalasia patients. Let me explain further. Five years ago I had lost so much weight due to malabsorbtion and my weight had gone down from 8 stone 8lbs to just under 6 stone. So I had to have a jejunostomy fitted and it was made very clear to me that I would need tube feeding for life even if I could only eat one small meal (the size of which you would give a toddler) and a few snacks besides. Anyway, it was agreed with the dietician that to keep some of my independance during the day I would tube feed overnight. Within weeks I was having a huge increase in reflux and it was decided to referre me to an Upper GI Surgeon in Liverpool two hours away from where I live. I was prescribed Esimeprazole (maximum dose each capsule) twice a day and sent home to return in 6 months. The reflux continued. One year ago I was also prescribed a liquid medicine containing Antepsin but was told that there were problems with the production of this drug but they would continue to manufacture the tablet form. The big thing with this drug is though you are only supposed to only have a maximum dose four times a day when you have a bad day or night you can take additional maintenance doses up to 8 in total. They stopped the liquid form so now I am on the tablets. The reflux continues but less than before. On the second of this month I had to stopp bothe the Esome p razole and Antepsin tablets for a week before having my jejunal tube replaced. I was told not to take any as they wanted to see how my stomach tube (post oesophagectomy) would cope without them and to see what damage the reflux could cause. That was on the second. On the ninth I had an enteroscopy to do the tube chage and check everything else. There was some inflammation. On the eighth night when I could restart the tablets the reflux was very, very bad and I did not get any sleep for four nights. Then the tablets kicked in again. I am going to Liverpool for a check up with this GI surgeon this coming Monday and will talk about your book with him if I can have your permission. I will let you know what happened. Speak to you then.

  • So sorry to read all this Chrissie. I have just reorganized the book and added some information so take a look at the new download. I am getting so many suggestions and comments it is hard to keep up, but I love it! There is so much to research and the use of PPIs and the preservation of the esophageal mucosa is a big topic. You certainly have my permission to take the book to him! Please let me know the outcome. Best....

  • The parts of the chapter on reflux that interest me have been handwritten down on note paper and I will type everything up tidily ready for Monday morning and though he is a very busy man (he and his surgical team have in recent years teamed up with the thoracic team at the Liverpool Heart and Chest Hospital where I had the oesophagectomy), I am sure he will be very interested in what you say in the book. I will leave the typed notes from your book with him to read at his leasure and see what he has to say later on. But something has to be done about my reflux as it is so bad even during the day. At night I am fast asleep and all of a sudden and before I have a chance to do something I jerk upright in bed and cough like there is no tomorrow because the reflux liwuid always goes down the wrong way into my lungs. Now you can imagine this burning car battery like acid/bile burning my throat, mouth and lips when it jets up from my stomach tube (new oesophagus). I manage most of the time to puke it all up into a bucket next to my bed. My mouth by now is burning something terrible and still I cough. Luckily I can get most of what goes down the wrong way out by coughing it up. What comes up is acidy and has some of my jejunal feed in it. Now I can hear what you are thinking could I sleep with the head of the bed on bricks and or with more pillows under my head and shoulders? Well I already do this, I even have two rolled up and taped pillows under my knees to try and stop me slipping down the bed and ending up flat on my back. You see what I am up against here. I always end up on a night like this trying to get some sleep sitting up in a small armchair near my bed. Yes, I am at my wits end with this reflux but what worries me in particular is the amount of bad chest infections I get from this reflux gunk! Recently while signing the consent form for the enteroscopy the doctor performing the procedure asked me if I had had a heart attack recently and I said to him that it is quite possible. I have had an Echo a normal chest Xray and both came back normal so I was then sent for a Calcium CT Scan which showed up some abnormalities which will be talked about in clinic this coming Monday. You can see that things are worsening and I blame the reflux for this. But imagine now, I have had the Ivor Lewis version of the oesophagectomy and my insides have been pulled up and my stomach made into a tube with the Pylorus valve still in place. What can this very experienced surgeon do to treat the very terrible reflux which incidentaly even with the Esomeprazole and Antepsin keep me awake for three sometimes four nights a week????? That is the conunderum that faces me these days yet the reflux while most definately causing my numerous chest infections is getting worse as time goes by. What is the next step that can be taken from here when faced with worsening health??? Sorry if my posts are a bit long.

  • Hi Steve. Well my clinic appointment yesterday didn't go as planned. Again I talked about my reflux especially at night and once again I failed to get anywhere with the doctors on that score. I was catagorically told a big fat "No!" I was told that I was at the top of the tree medically wise and that I was already on the best medication available and until an even better tablet or liquid medicine becomes available I am to stay on what I have now. He did get his facts wrong a bit though. He got confused about which valve was removed during the Ivor Lewis. I said the oesophageal/gastric valve and he said Pyloric valve. I said to him that it was most definately the oesophogeal/gastric valve that was removed because I have an anastomosis in my neck. He then said that he had read things incorectly and sorry. So I said to him that if I have problems with bile reflux in theory they could tighten the Pyloric valve to try and control the reflux of bile to an extent couldn't they? He then said "Hmmm. We will discuss the possability of this in out next appointment in May if that is alright with you?" So the appointment ended. Oh I told him in graphic detail how bad the reflux is for me now and what I have to cope with every day. I think he took it in. I did mention you and your book and fair play he asked a few questions about our connection and about you. He was interested like me in your chapter about reflux and hummed a bit as he read my notes interesting he said but nothing more.

    I would do anything to get relief of some sort from this reflux at night. I told him I get frequent chest infections when the bile reflux and some feed from the jejunal feed going down the wrong way. He got alarmed when I told him this as he said that saying that I was at heightened risk of pneumonia or serious damage to the lining of my lungs.

You may also like...