I just found this forum. I am a nurse from USA and have have Achalasia for greater than 15 years.

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I just found this forum. I am a nurse from USA and have have Achalasia for greater than 15 years.

I am a 55 year old male. Male nurses, I understand, are more prevalent here than in the UK and many other parts of the world. I find that support groups and forums can do a lot of good. I know I felt excited when I found this site. It helps to connect with others who know what we are going through. Achalasia can cause us to do things associated with eating that are embarrassing and appear crude; therefore, it can take ones dignity. The men in my parish go brook trout fishing each year in the autumn. I love camping and fishing, although my fly-fishing form is anything but poety-in-motion. I will not go because I would keep the rest of the campers up with my nightly hacking and coughing. (I'm considering nominating my wife for sainthood for what she has endured. I look forward to getting deeper into the subject and reading other's posts.

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  • Posted

    I am sure that you are right about patients with similar conditions finding help and support from others in the same boat. It does affect your quality of life because eating in company is one of the things that should be enjoyable.
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  • Posted

    Here in the USA there is an idea that beverages should be iced. In order to get my food down to my stomach I must drink a lot of water. The coldness of iced water only makes it more difficult. Often, I have difficulty getting American waiters to serve me water with no ice, no lemon, just water. It is really a strange time period in which we live, when it appears strange for one to drink God's own soft drink, the original (water). While a pint works as well at washing the food down, the quantity needed to do the job would have me tanked for the drive home, something the local authorities nor the board of nursing tolerate well.
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  • Posted

    One of the things we do over here is to have little OPA restaurant cards printed stating that due to a medical condition could we have child-size meals, please. There is no real logic to why these should work, but somehow having something printed makes them take a bit more notice, and perhaps allows them to make an exception to their normal rules. So maybe something like that might help?

    Alan

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    • Posted

      Good morning!

      i am an Achalasia sufferer and wondered how I get hold of these cards .... I eat out a fair amount and these would be very useful as I get tired of explaining! Thanx Jan

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    • Posted

      If you telephone the Oesophageal Patients Association - 0121 704 9860 - I am sure they will send you some, or ask them by email.
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  • Posted

    That is a good idea! Thanks, Alan, for the thought. You are right, of course, the printed card does lend some apparent credibility.

    Now my cynical/sarcastic nature is twisting my arm to make this next comment. You are also right about how anything stated in print seems to have a certain authority. All three of Disraeli's categories of lies (Lies, Damn Lies, and Statistics) are regularly found in the commercially printed word. In addition, it is just amazing how everything on the internet is true.(wink, wink)

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  • Posted

    Hi

    My achalasia started about two years ago when i noticed i could not swallow a sandwich.The symptoms

    came and went but eventually became permanent. I found it difficult to swallow most foods and drinks and on many occasions i would have severe pain in my chest and i would vomit at the drop of a hat. I also suffered with bad reflux at night when asleep but i later learned this was not gastric reflux but oesophageal reflux and was due to food and liquid remaining in my oesophagus. All in all, life became miserable.

    I had a barium swallow which identified dysphagia and achalasia and the subsequent manometry tests confirmed the diagnosis. I was prescribed anti acids pills and nifedipine which is a blood pressure tablet but does aid swallowing. I didnt find most medication did any good at all. Perhaps the most distressing part of having achalasia was the continual build up of huge volumes of frothy saliva in my oesophagus which sometimes made me feel like i was drowning in my own saliva.

    I tried eating less; tried propping myself up in bed at night; taking anything that relaxed the gastro-oesophageal valve such as alcohol and chilli and i was desperate. Nothing made much improvement.

    Four days ago i went into hospital and had a heller myotomy and a partial anterior fundoplication done with robotics involving five small holes in my abdomen. I am at the moment eating a watery soup diet for a couple of weeks then a baby food diet. Immediately after the operation i noticed first I had no more frothy saliva in my oesophagus. Then when i had a drink of cool water i felt it run straight into my stomach. I was even able to burp slightly. I am eating soup which goes down without any difficulty. Utter relief.

    Im taking esomeprazole to reduce acid in my stomach and may well take these permanently. So far the op seems to be a success. My stomach/abdomen feels sore and i feel a little bloated after eating but in these early days its little and often and watery. I have lost a lot of weight both pre and post op and im missing 42 ibs. I was a large 16 stone guy and my doc said its a lot healthier to lose the weight i have but when i get on to a normal diet it could go back on if i am not careful.

    I know a myotomy and fundoplication does not work for everyone but my surgeon said it depends on how bad the achalasia is. If you have it then dont live with it. See a surgeon experienced in this type of surgery. When it doesnt work its often because the syrgeon has not dissected the muscles of the oesophagus entirely. So you do need to get treatment asap from a surgeon who knows what they are doing. But so far so good. The best bit is not drowning in my own saliva and being able to swallow food and drink properly again..oh and not having to sleep propped up in bed.

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  • Posted

    hello graeme,

    You sound great, and from what I've been told and read you are absolutely right, the quality of the surgeon makes a big difference in this procedure. As a nurse, I would suggest that you dont find those stones you lost. (don't regain the weight) The extra weight will only make the functioning of your oesophagus worse. As you are probably quite aware, there is a whole laundry list of reasons why a version of you which is lighter is healthier. Thank you so much for the encouragment, reading about others positive outcomes helps to make surgery less of a scary idea.

    As a result of the procedure are you now having any reflux? What of your recovery time interval? At this point, how long does it appear your recovery (procedure to return to work) will be. ( let me know the type of work you do because it will influence the answer to the privious question.) My work is very seditary.

    I am but a hobbit, height 5.5 ft 10-11stones. My problem is, I eat like a hobbit also. Therefore, weight loss is not one of my concerns.

    I do envy you, being able to swallow like everyone else. ...and the sleep deprivation... what I would give just to be able to sleep a whole night without coughing and gaging like some ogre. I get up because I don't want my wife to loose sleep also.

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  • Posted

    Hi Richard

    Nice to hear from you. Well i think the recovery period is going to be different from person tobperson and maybe influenced by other factors but i was let out of hospital day after the op. I am retired but was an immunologist. I reckon I could have easily gone back to work today, i.e 5 days after op. I guess a week to be sure.

    My surgeon said liquid diet fior first two weeks, then baby food dut two weeks, then more normal diet last two weeks before a return to clinic. This is to help the mucosa heal and not perforate. At moment im on a soup diet,...... but those soups with a bit of vegetable, bit of chicken, potato etc. But i make sure ibuse my teeth to grind upbevery mouthfull before i swallow with water. I also eat yogurt a go go.

    My surgeon said he reckoned the complete recovery time was about six months. He said i would find some foods which just dont agree with me and i should remove them from my diet. He did say it involves a life style change. I have always bolted my food and i now have to learn to chew each mouthful a thousand times, i also have to learn to eat and swallow smaller mouthfuls and drink more water. All this is diffucult for me but if you have achalasia you have to make lifestyle changes.

    Before my op i was starting tobdo just that tobhelp sleep at night. I tried to eat very early in the evening, never late. I would drink light drinks in the evening and two hours before bed i would drink a weak coffee to help flush anything in my oesophagus into my stomach. Then i would take one nifedipine tablet just before sleeping on three soft pillows. I found that procedure helped remove most of the episodes of waking upbchoking with reflux. I was and now am taking one 40mg tablet each day of pantoprazole (but esomeprazole and others are as good). This tablet is vital.

    I do remember when my surgeon as explaining the op to me he said many ops fail when the surgeon fails to find all the muscle fibres in the section of the oesophagus where the myotomy is done. He said if you leave any intact it fails. He also said some surgeons dont do any fundoplication and in his experience that is easily a recipe for disaster as stmach acid can then easily assault the mucosa and reflux is a major problem. So the gold standard is a good myotomy with a oartial or full fundoplication. Partial is possibly better as in many people it can allow belching and thus reduce stomach bloating due to gas. Personally ive given up coke cola and beer (unless flat)

    I did pre op invest in one of those reflux pillows for my bed (cost me us$120) but i didnt get on with it. Many reckon they are brilliantcat reducing nightime reflux. What you must realise is that night time reflux is not gastric reflux in achalasia. Its more likely oesophageal. One may also have gastric reflux but if you have achakasia and the gastro oesophageal valve is narrowed to almost nothing (the classic parrotts beak) then its the contents if the oesophagus causing the problem. So eat early. Fast before bed time. Coffee two hiurs before bed time (coffee worked for me. Its a bit of an irritant and makes the valve open)'. Nifedipine tablet. Three pillows and then sleep.

    Bezt regards

    Graeme

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    • Posted

      THANK YOU for all the great information!  I learned more from you than my surgeon at Mayo Clinic here in the USA.  I am exactly one week out, and was told from my discharge (day after) to have liquids and soft foods for three weeks until follow up appointment.  I have managed to stick to pasta,baked potato, mashed broccoli, mashed fish cakes and yogurt.  I was very bloated and it took almost 6 days to start feeling and looking normal.  I'm finding I still have mucous but probably has to do with Asthma.  The immediate improvements I noticed were no more sore throat, no vomitting food, my voice is strong and clear again instead of weak and hoarse.  Besides Asthma, I have several lower spine issues that will require surgery, so walking and standing is only done after injections or ablations.  I have to watch my carb/sugar intake as Diabetes is in my family and I am close to borderline for pre-Diabetes, so food choices are a bit difficult.  In normal times I would not be eating potato or pasta. I sleep with a wedge and regular pillows but find I end up slipping down during the night.  I miss my Diet Coke the most and hope I can have that back soon!  All in all my life has been improved by having this surgery and hopefully it will remain and even get better after a few more months. 
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  • Posted

    Hi Graeme

    I think that when they do these keyhole-type operations they pump some air into your body to allow them better access for the surgery, so perhaps that accounts for some of how you are feeling. But it is definitely worth seeing an experienced surgeon, as you point out.

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  • Posted

    Hi

    Yes they do pump you up quite a bit. I was aware that some people had complained of pain after the surgery due to air trapped inside. I did ask my surgeon about this pre-op and he said they will have 5 holes in my abdomen and chest and when they have finished the op it is not difficult to get the air out and the minute amount left behind disperses without any problem. I think there have been some folk complaining that the op didn`t work or they suffered pain or discomfort afterward and as we all agree it goes back to finding an experienced surgeon who has done many of these ops. This is not surgery for any general surgeon. It needs a Consultant very experienced in Upper Gastrointestinal and Bariatric Surgery.

    Regards

    Graeme

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  • Posted

    I have low BP so my docs don' give me the Nifedipine, though I've read that it helps some significantly. My Low BP is the result of good genes and I was a crosscountry runner in another life. For me, ninstead of coffee I have found beer works well to flush the oesophagus. It doesnt matter if it is got ETOH or not. For me, I react negatively to most acidic foods and drink. Therefore, fatty foods(fatty acids) soda-pop, many fruits and fruit juices are out. I have an ectasia just superior to my cardiac sphincter. I suspect that part if not all of the food matter that interferes with my sleep is pocketed when I attempt to flush my oesophagus. I also must avoid foods that are crumby, or grainy because of aspiration.

    Another thing that suprized me was that preop, a PPI seemed to help you.

    On the subject of the carbon dioxide used in laposcopic surgery. One source of postop pain has to do with the pressure level used.

    Sorry, I have to watch myself, I am dedicated to patient teaching. It is so important to patient outcomes, therefore I find that I teach even when I do not need to do it.

    Now, Graeme, as an immunologist, what is you idea as to the cause of Akalasia? Do you think it is autoimmune?

    I,too have a wedge pillow but the oune I have has too great an angle. The angle is greater than 30 degrees, and tend to slide down the pillow during the night.

    Other than the food matter I also seem to have post nasal drip wdhich agravates the problem even further.

    Sorry for rambling in my discussion

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