In the past we have had a number of posts from people on this site who have suffered from achalasia, and are conscious about the apparent lack of support that is available for people suffering from it. Personally speaking, I do not know all that much about it, other than it creates real problems with swallowing.

The oesophagus should work with a series of muscular spasms, making food progress through the system, but when this does not work properly, food can sometimes stick, with hardly any progress in food getting below the sphincter muscle into the stomach; or the sphincter muscle tightens and cannot relax enough to let food get through. If the sphincter muscle stays open, then there will be problems with acid reflux rising from the stomach.

I suspect that there are problems with getting a proper diagnosis and then being referred for treatment. And, like many unusual conditions, it is not always easy to find a doctor who understands it thoroughly.

So can I ask for people's experiences please?

We are thinking about setting up a meeting for interested people to come together and consider what might be done to improve things.

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8 Replies

  • Hiya. I was diagnosed with Achalasia in 2009, after a year of going back and forth for tests. I was given dilatation which was no relief for me. The chest pains I used to get were horrendous, longest episode lasted 13hrs.

    When referred to surgeon he said to me that esophajectomy was really my only option. God I really didn't realise how major this op was. I had the procedure last August. To this day it was the worst thing I have ever done. I suffer with so many problems and my ability to eat 'normal' food is pretty much a no go. I have a jejenostomy feeding tube, have constant discomfort on left side and horrible dumping syndrome. Sleeping is a nightmare and ime wandering if this will ever get better. Sorry for being so downhearted but this year has been awful.

  • Sorry to hear about your problems since the operation.

    On the sleeping issue, people do often find it easier to sleep keeping to one side because of the way in which the body relaxes and sometimes affects the new digestive arrangements. Sleeping with your head & neck propped up and with a memory foam mattress can make things easier. Some people experiment by putting bricks etc under the feet of the head of the bed.

    Lack of sleep does make everything feel worse.

    Can you be a bit more explicit about which foods are not possible and why? Is it because your system is not processing the food and letting it progress through your system? or is it the effects of the food itself because of nausea/vomiting?

    I suggest that you keep a food diary (downloadable ) to see if you can tolerate any food?

    Can you say when you get the 'dumping' sensations? Is it within 20 minutes or so; or is it a couple of hours afterwards? I think that you might wish to try something like Slimfast because it is likely to go down fairly easily and you will not get the nasty effects of sugar / especially refined sugar / fat etc that might be making your insulin levels spike. There is also a factsheet on low glycemic index foods on the same page of the website.

    Eating little and often is a very important thing.

    I would endeavour to see a specialist Upper GI dietician.

    The discomfort might be to do with the feeding tube, or have some other surgical explanation.

    I think that things might improve if you try to be very systematic about the food that you eat, and how you eat. You clearly have some serious problems, but the surgeon would not have suggested an oesophagectomy for you in the first place unless it was the last resort. My guess is that digestion problems after an oesophagectomy for achalasia is a very specialist field. I do suggest that you telephone Dawn on our helpline 0121 704 9860, and we will see what else we can suggest.

  • Thanks for your response. I have my bed raised and have several pillows. I can only sleep on my back as left side is too uncomfortable. My left side pain is due to aspirating into my left lung, well that's what I think. Also very prone to chest infections. Think I have had about 9 since my op, twice led to pheumonia. I had swallow tests done few wks ago and they can see where narrowing is again, at the join. Have had 4 dilatations since op. Ime fine with blended down soups but solids are far too much work and stick then come back up, I've given up for just now. I take strong pain relief each day, oxcycodone, oxycontin ( ime sure this def helps with dumping syndrome). Ime waiting for phonecal from surgeon to see what the next step could be.

    Ime just so frustrated as I feel I have went through all this for nothing. Ggrrrrrrr

  • Hi I have achalasia,i had bad reflux for couple of years and eventually had a hellors myotomy operation done in 2012,it has been fine since op im eating allsorts now thank god .awful that feeling of wanting to bring up everything you eat or drink.I have barrets oesophagus also ive just had routine check via the camera down and all ok thankfully.

  • Hi all

    I know I am coming into this conversation late but I need some help desperately if anyone answers me?

    I have been unable to eat since last August (2014) and I am now going for a manomtry and PH 24 Test to see if I have achalasia my consultant seems to think I have. I cannot eat ANYTHING all I can do is either suck sweets or chocolate and drink mocha coffees I have seen a dietician who has prescribed me thiamine and vitamin b and said I need to have complan to build myself up he also said because I have not eaten for so long I have to be careful I don't get refeeding syndrome? I have to buy new clothes size 8's hang off me and size 6 super skinny jeans are now getting loose? My appointment for the tests isn't for another 3 weeks and I am scared I don't know what to do? For the last 8 months my GP has been thinking it was all in my head, I suffer from chronic pain In my back and have been depressed of late because no one was listening to me,but now my consultant has told me it isn't in my head I do have a problem and he has promised to help me but 3 weeks seems an age away and I am just so tired? I try to eat, I really do, scrambled egg, porridge, soup, but none will go down it sticks in my chest and causes pain for hours. I'm not sick tho it's as if the tiny amount, maybe 2or3 spoonfuls, has to slide down my gut and drip into my stomach. Please please can anyone help me I am desperate:-(

  • There are a number of people who have achalasia who are sometimes mis-diagnosed with a mental type eating disorder, so you will not be alone in this respect. You are now at least booked in for the right tests. Have you had a barium meal swallow test (but you will likely know the result of what that would show already I expect)?

    You are probably tired because you are not taking in the right amount of nutrition, and you may be correct that you have to build up your intake slowly. Can you cope with the Complan? If you can, go for it. Otherwise I think I would be inclined to go to your GP and ask for a prescription for some special nutrition drinks, preferably ones that are as liquid as possible (some are milky). And then gradually sip them continually through the day. Do not overload things if it is not going down below your diaphragm. Try and relax when you are consuming them. And eat very small quantities at a time. Wait until one mouthful has gone down all the way before having the next one. Some people find small amounts of banana help

    Sometimes rising up on your toes and then dropping on to you heels might jog things through. Does massaging your diaphragm help?

    Try Buscopan as a possible medication (on prescription). Some people find ice cold drink helps with spasms; others tend to go for warm water. I am sorry that this sounds like trial and error but that is what it is. As a last resort you might have to have a feeding tube fitted, but hopefully you are not at that stage yet.

  • I was diagnosed with achalasia in my early 20's. I have had a couple of balloon dilations and an unsuccessful hellor myotomy. The symptoms remain and the difficulties swallowing effect food and drink. My uncle was also recently diagnosed and received a successful hellor myotomy.

  • I am not aware that achalasia is a hereditary condition as such, but no doubt there are family connections that do arise from time to time, as with many other conditions.

    As the myotomy was unsuccessful you may need to have a talk with the surgeon about what the future options might be, and why the surgery may not have worked as hoped. The more specialist the surgeon, the better. I understand that even the most successful treatments do need a certain amount of lifestyle adjustments and the surgery itself won't necessarily put you back to where you were in the first place. So there would be a certain amount of adjustment about relaxation, eating soft food, not eating when in a rush and that sort of thing that allows you to 'manage' the condition as best you can..

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