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.
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.
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.
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
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)
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.
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.
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
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.
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
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
Well there are many theories as to why people get achalasia. It can be a symptom of another disease called chagas disease. This is a parasite you can pick up in brazil. I have been tested fir this and itcwas negaive (gogle it if youve been to brazil.
It may be caused by a virus but this has not been identified. Doesn't mean it isnt there. It may be genetic. It may be an auto immune disorder though no-one has identified auto antibodies as a singular cause. I have read it can start as a result of eating too quickly and eating or drinking foods that are too hot (guilty!!).
I couldnt begin to guess the cause but i think acid reflux and damage to lower oesophagus nerves may be a cause.
Your experiences of a wedge pillow parallel mine. I too slid down it when asleep and i just didnt find it very comfortable so i used three pillows. But the secret to a decent nights sleep is tobtry to make sure there is nothing in your oesophagus when you go to bed, not even water!!
Just an update of my experiences five weeks post myotomy and fundoplication
I have just started eating a more normal, but still softer diet. Firstly previous symptoms of a saliva filled oesophagus have gone completely. I no longer suffer with reflux at night and can sleep comfortably on two pillows, no more being propped up with half a dozen pillows to sleep. I do wake up at night with stomach pain. Not every night and it feels like painful wind but i dont have any bloating. I find drinking half a glass of cold water helps. I dont experience any other pains and the small scars have healed very well (using bio-oil).
I find my appetite for more solid food is very poor. I can manage soups and slushy food but ive no appetite. This to some may be a good thing as i have lost nearly 3 stone. Ive dropped from an unhealthy 16 stone ti a much healthier 13 stone. Downside is a whole wardrobe of clothes that dont fit.
Swallowing food is ok. I still experience a little dysphagia with some slight sticking of food in the oesophagus but this is aided by chewing well and drinking plenty of water. Swallowing food past the fundoplication wrap is slightly strange and feels like it requires a little change in eating habits. Swallowing slowly and sitting up straight. I find it helps to drink a glass of water after a meal and to walk around a little.
In respect of tablets im only taking pantoprazole to stop acid in my stomach.
So really only negative is poor appetite and feeling like ive had a gastric band, but smalk price to pay for being able to swallow and no reflux at night.
Hi, could you tell me if you had food sticking in your chest with Achalasia? I am waiting for a Barium Swallow. I had an Endoscopy 4 months ago and it showed I had inflammation, small Hiatus Hernia and H Pylori, and was put on a course of antibiotics for the H Pylori. The Endoscopy did not show Achalasia.
When I have food stuck in my chest, I get a lot of belching/gagging and bits of food coming up. This can go on for 2/3 hours until whatever is stuck is cleared. Did you have this problem? Sometimes, I can't burp either and this feels uncomfortable. What foods did you eat before your operation?
I hope I don't need a Manometry test, because I have read that this can be quite dreadful. I don't like anything down my throat because I have a poor gag reflux.
Hope you are now feeling much better after your operation.
Merryl
Graeme this one is for you.
The symptoms sound right for achalasia but your history ( what you say has already happened to you would cause one to Think, not.
Each of us is intelligent and like to think for independently, but if you are having signs and symptoms similar to what is being described, ask the doctor. I, nor anyone hear is qualified to diagnose. The ailments you have in your history would typically be treated in the "opposite" way
That is the above queStion is for you. The comment was for Merryl
Merryl, as you described the symptoms, they could be cause by diagnoses you already have. The body has a small vocabulary. For instance, you stomach can hurt, feel full, or be nauseated . That is most of the symptoms one can have. On the other hand there are thousand of things that can be wrong.
Hi Meryl. The symptoms you describe could be those of achalasia. The diagnosis of achalasia is based on
A number of parameters. Achalasia is a condition where the nerves which control the muscles ofcthe oesophagus cease to function properly. So the normal contractions that push food down and into the stonach dont work as they should. Often the muscles controlling the gastro oesophageal sphincter do not relax propely and food tends to stack up in the oesophagus causing pain, and regurgitation. Sufferers also experience reflux of food or liquid from the oesophagus , especially when lying down asleep. Its a very disressing condition. A gastroscope simply rules out any physical obstruction such as a growth or any reflux damaged to tissues which could cause dysphagia. A barium swallow will show that the contractions of the oesophagus are disordered i.e dysphagia. The best test is the manometry test. It is not at all painful. It is a little uncomfortable when its pushed up a nostril and as it tickles the back if the throat but sipping water as it is pushed down alleviates any gagging. Believe me its not that bad. Sometimes they leave the tube in for 24 hrs to measure acid reflux. These tests will allow your clinician to determine if you have achalasia. But a hiatus hernia can also cause swallowing problems and is easily repaired with a minir op. So have the tests and hopefully your problems wont be due to achalasia, which can be a progressive condition, and willl simply be due to a hiatus hernia, easily fixed.
One other thing you asked about foods. Well everyone is different but many people complain thst foods such as bread and potatoes and rice can be difficult to swallow. Meryl you have gad a scope abd this has shown a hiatus hernia. Reflux inflammation and H.Pylori. These factors alone are enough to cause dysphagia as you describe, food sticking, regurgitation, belching/burping. But of course they can also be symptoms of achalasia. You need the tests.
Graeme
I bow to your choice of words , great reply
Hi Graeme,
Thank you for your reply. I just hope It is not Achalasia. I have read, it can be dreadful to deal with. My Dr referred me for an urgent scan 6 weeks ago to a Speech & Language but still no appointment. Could you tell me what involves the Speech & Language?
Regards,
Merryl