Tips for coping with Achalasia

Helpful Tips Collated from Fellow Achalasia Patients

NB These have not been vetted by the medical profession but are what have worked for some of us

Tips for coping

1 Eat smaller meals more frequently.

2 Eat slowly and chew well

3 Don’t eat too late

4 Beware of eating when feeling stressed

5 Eat fairly moist food

6 Lifting the chest and taking a deep breath also helps.

7 Keep a small bottle of water handy in case one’s oesophageal muscles go into spasm when out and about

8 Don’t have drinks too cold

9 Eat early in the evening

10 Don’t drink before bedtime

11 Don’t eat too many nibbles such as crisps and nuts or drink too many glasses of wine before a meal in the evening (I know one should only have 1 or 2 glasses of wine but . . . !)

12 A good start to the day is a fruit smoothie using a wide variety of fruit liquidised with a live yoghurt and probiotic (actimel) and a good teaspoon of manuka honey.

13 Multigrain toast with Somerset brie is also a favourite, helped down with hot water.

14 With a good variety of nutrients early in the day, I don't have to worry about having to eat much else. Ironically, that then makes it easier to eat.

15 Always have a drink with the meals: sparkling types can be beneficial, and gulps between every few mouthfuls help

16 My most important factor in managing my eating has been drinking hot water (temperature is important - half cold and half boiling). Mastering a technique which worked for me took time, but is worth it because I am now comfortable eating out and the only downside is the copious amounts of hot water I might need to drink to get the food down. The technique involves judging how much food I can eat before I have to gulp down some water.

17 Soups are a good way of eating a variety of nutrients as they can be liquidised. I include all vegetables and pulses and experiment to get something I really like, sometimes topped with cheddar cheese.

18 I avoid eating skins on fruit and veg, but do churn them up in smoothies and soups

19 I avoid fatty meat and eat mostly chicken, fish or vegetarian dishes. I can even manage pizza if I drink enough hot water with it.

20 I also avoid spicy food and drinking alcohol with food is very difficult.

21 Salads are best eaten with lots of dressing and in small quantities.

22 Be aware of the types of food you personally need to avoid, and what can be digested easily.

23 I avoid the following:-

a) Large lumps of meat. The only meat I consider eating is mince usually in the form of a cottage or shepherd’s pie.

b) Dry chicken can be a problem. Meat in a sauce or casserole is usually better than anything else.

c) Pasta of any sort.

d) Too much bread. I can eat crackers better than bread.

e) Potatoes can be a problem if boiled but thin french fries are not too bad.

f) Rice. My first bad experience of Achalasia was with a dish of paella. Fried rice is better than fluffy stuff.

g) Spotted dick or similar dry sponge puddings are avoided.

24 Food that gives me little trouble:-

i) Soup

ii) Fish - salmon or battered cod seem good.

iii) Salads

iv) Stir-fry food is usually fine

v) Funnily enough quiche or similar is usually not a problem

vi) Cheese with crackers

vii) For dessert ice cream is best.

25 Basically it seems it is the consistency of the food which has more influence than anything.

26 Don’t eat too much bread in one sitting and eat good quality bread rather than soft white bread which is particularly bad for blocking the oesophagus

27 Avoid very dry food like falafels, raw cauliflower, raw carrot

28 Best foods were weetabix, readybrek, custard, sponge puddings and mashed potato. . Not the most healthy range but I was advised by the dietician at the hospital that it was more important to keep my calorie intake up than eat healthily.

I was prescribed Fortisip milkshakes which were a lifesaver as they are full of vitamins and nutrients.

29 Probiotic pills/Acidophilus powder as a major part of immune system is in one’s gut

30 Echinacea and Manuka honey to boost immune system

31 Sleep propped up with lots of pillows (before the operation) to help stop food and drink coming back up at night

32 A bed wedge is a useful alternative to lots of pillows to keep you propped up at night.

33 I always finish the day with a good teaspoon of manuka honey and lemon juice in hot water. This is after I have ensured as much as much as possible that all food has been washed down. That way I am left with manuka honey in my oesophagus overnight. I haven't had a cold for the last couple of years so I think it might have given me some protection.

34 Relaxation helps to avoid spasms and pain with the sphincter.

35 I find yoga helps as does drinking hot water to relieve the pain.

36 Pain from the sphincter can be avoided by warming up cold food and drink in the mouth first before allowing it to go down. Avoid letting the chest get cold. Cold wind can set up pain. |I wear a scarf even if I don't feel cold.

37 Talk to other Achalasia sufferers. It helps so much to know you’re not alone!!

Ann Elms and Amanda Ladell, who run the London meetup Group, would like anyone who would like to speak about their experiences with other Achalasia sufferers, to email them.

They meet up every 4 months - therefore please contact them for the next meeting date if you would like to share your experiences.

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Thank you so much for those tips. I have just been diagnosed this week with Achalasia after being misdiagnosed with acid reflux since I was 14 (I'm 24 now). I am so relieved I wasn't going crazy as I was beginning to think well maybe I am bringing on the symptoms as I imagine them! I can rlate to everything you are saying above and some of those tips are what I've been doing to live with it, not knowing it was a condition. Thank you!!

This is excellent advice. I wish that I had read this two years ago when my condition started to get much worse. I had achalasia (but tried to ignore it) for several years previously. Did not go to doctor until I could not swallow after a meal. Silly of me, but common. I ended up in hospital, which led to diagnosis and the operation three months later.

RICE was always the worse thing, and it still causes a problem, so I now avoid it. I had the operation last summer. Much better now, but still have problems if I eat too quickly. Also it is essential to drink plenty of water with a meal. I always start the day with porridge. Yogurt is a good sweet.

Thank you for the information.

Yes Rice is the worst thing ever...I ate it only 2 times since I had this case, and I had to vomit to be able to breath!

Bread is so bad also, crackers are okay, salads are great, corn flakes is well swallowed too.

I avoid meat/chicken/fish chunks...i need saucy stuff.

Pasta is okay for me...

But my main problem is that I have been a fast eater all my life...i dont chew and i cannot stop this nowsad

I get spasms all the time too in my sphincter very bad ones that i burst in tears...

o.m.g. how do you manage corn flakes .i love them but they are the worst thing ever for me.and i can eat rice ,wholemeal bread.ryvita, but not crackers.

I had op last year and swallowing is going downhill already,but hopefully i can maintain it with being careful.

S

Hi all

I could'nt agree more with this post and and even before coming across tips for coping with achalaisa i was finding myself doing many of these things to cope with this condition so for those of you who are struggling with achalaisa i hope my comments lift this post back to the first page where it belongs

cheers all

jim

p.s. i still have difficulties with just drinking water

Hi All,. If I can just reiterate (for anyone new reading this forum) on this part of the suffering of achalasia and

the do's and dont's,.....please bear in mind that what works for some will not necessarily work for everyone.

To recap, Ive had the condition for well over forty years now and have never had medication or treatment of

any kind. To stem the pain of indigestion that occurred habitually in my early days (and I got this severely and on a prolonged basis at times, sometimes for days on end) I used Asilone powder mixed with water or

very often sucked extra strong mints to quell the attacks.

One thing I did discover is that stress of any kind will play havoc with controlling the way in which you attempt to swallow your food. This point has been raised by many and my experiences and findings certainly

confirm that eliminating all the bad "thought" stresses that one encounters without a shadow of doubt does with careful relaxation help immensely when eating.

Many say that fizzy drinks help, some, as above have said that only hot or warm drinks taken or gulped down do the trick. Others say only cold, and if anyone is like me then the drinks have to be iced up to the max before I can even consider any eating. I do know that if the only water taken by me is even so much as tepid (from the tap) or is straight from the supermarket shelf I know by experience that trying to gulp that down would ensure that Id be sprawled across the floor within seconds of any attempt to swallow. This is the problem with achalasia it is such a random condition (the only common factor being the inability to swallow in itself)

that it affects everyone in so many different ways. I cannot begin to imagine how anyone reaching adulthood or later being suddenly afflicted with it manages to cope. In some ways Im lucky because it started with me so very early and so Ive been able to educate myself to take control so that it hasnt totally ruined my life.

Regarding the foods, the only thing I have to watch is undercooked or rare meat, almost a complete "no no" or bread that is over doughy. If Im honest I dont do well with slippery or soup like foods either, which

probably contradicts other sufferers abilities, where they can intake these. This is probably because I force absolutely everything (including other drinks) down with maximum chilled water. Strange isnt it that

one liquid has to be forced down with another one, but thats just my case. There again, I chose never to be treated for this condition and the only thing truly it has gravely affected is that it has limited my social eventing but on the positive side has controlled my weight to the absolute degree because of the disciplined approach needed to intake food.

Bless you all. I know what you go through

Mike.

I like XS energy drinks,

They use be Vitamins as their major source of energy,

They have zero sugar, zero carb, and caffeine levels of a cup of coffee....

Yes Rice is the worst thing ever...I ate it only 2 times since I had this case, and I had to vomit to be able to breath!

Bread is so bad also, crackers are okay, salads are great, corn flakes is well swallowed too.

I avoid meat/chicken/fish chunks...i need saucy stuff....

i had achalasia for 4 years before i had a heller myotomy, i can eat anything now, i had a brilliant surgeon and couldnt thank him enough. before the op i used liquid b vitamins, liquid vitamin c and any other vitamins i could manage. i found icecream helped, not that i wanted to eat icecream but it was one of the few things that went down, also quavers. apparently there is a link between b vitamins and achalasia. worth a try. if anyone is wondering about the op it was fabulous, a bit painful after but worth it, i would love to help anyone in any way i can.

I had Oesophageal Spasms which developed into Achalasia for about 5 years. Eventually after a Botox treatment which didn't work we tried balloon dilation which was an AMAZING success practically overnight!! I also had a brilliant consultant whc diagnosed the Achalasia after having no luck with my first consultant at a different hospital. I have been able to eat normally for about 6 years now although I have the occasional Oesophageal spasm. This has been more frequent this week and I am wondering whether anyone has tried yoga to help them? I am hoping this isn't the return of the Achalsia!! I would highly recommend the balloon dilation and also persevere with the health proffessionals!

Hi Claire.

Just reading your post on dilatation. i to have had Achalasia for a number of years and managed to get by with dilatation , the first atempt was'nt very successful but then my surgeon used fluroscopy during the procedure and straight away it was a relief, i would recommend giving it a try if its available at your hospital.

I still have annual endoscopy's and the offer is always there from my surgeon to operate but if it works this well for me it may be another option for you , i hope this helps and i am happy to reply to anyone about my experience with this procedure

regards, Jim

I'm surprised there have beeen no disagreements to the tips in the initial post. For me, rule no 1 would be almost guaranteed to bring on achalasia, not prevent it. I find swallowing easier if I only eat when I'm really hungry and then eat as much as I comfortably can, even if that means just one meal a day (with maybe the occasional coffee + biscuit at other times). The more active I am the hungrier I get, so that helps too.

Just goes to show, it affects people in different ways.

It really is amazing the disparity of symptoms, the consequences and the various interventions of this condition. I started with symptoms in 2011, firstly with pains in the chest that initially alrmed me as they occurred at night and felt like I was having a heart attack. Then occasionally I had them by day and tried over the counter heartburn tablets which did relieve the pain. Then when I was going through a particularlIy stressful time (in a life already stressful), I begain to regurgitate my food, often at the first mouthful. If I dined out, I had to check where the loos were so I could make a dash if necessary. I realised this was often with a person with whom I was having relationship difficulties and which highlighted how stress plays such a factor in my condition; indeed I believe my Achalasia was caused by years of incredible duress and this was explained when I read an item about the effect of stress on the immune system. Luckily, my consultant leads on this condition in the UK and immediately advised a myotomy which initially was very successful. It is just over a year and I'm starting to experience the twisting feeling in the gullet but that correlates with a another stress inducing incident which is ongoing. I'm hoping when these stressors resolve that my recovery will improve. My worry is that they're already doing permanent damage. btw I'm always battling my weight; er - to get it off!!! Can't win:-( Maz

Not sure how active this forum is. I am 67 and although have had swallowing difficulty off and on for years it was only when I started vomiting that I went to the doctor. I was referred to a consultant and had the pressure test but am not sure that my consultant actually knows much about the condition. He is going to give me botox injection (which sounds feasible) but prescribed some tablets called Tildiem that are prescribed for high blood pressure and angina only (neither of which I have) and nowhere on the internet or the information sheet does it mention their use for achalasia. I haven't taken any as the side effects were ones that affected the gut and the consultant had already told me I have IBS (which I'm not convinced about either) The way I have learnt to cope is eat slowly and stop immediately I feel discomfort. Drinking anything is pointless as that just adds to the amount of blockage. It doesn't matter what I eat, it can happen with anything. My consultant told me to cut down on wheat-based products and fructose. It didn't make a blind bit of difference! If we are allowed choice on the NHS can someone tell me the name of some consultant that has an interest in achalasia? I also have periodic spells of terrible pain at the bottom of my oesophagus which have the symptoms of gallstones (which I don't suffer from) and last about 4 days. I'm sure it's connected with the achalsia but the consultant thinks it's part of IBS (I don't agree!). I live in North Wales.

French marigold, good grief, how do you manage without drinking? I'd starve if I couldn't wash my food down with water, but then I've had Heller's myotomy so my peristalsis, if it still exists, won't have much effect.

Anyway, I wonder if the pain you mention at the end of your post could be your oesophagus going in to spasm. That's what mine did before the operation, and it could be painful. Just a thought.

Hi Alan T. I'm sure my intermittent pains are something to do with my oesophagus but my consultant just dimissed them as a symptom of IBS. I don't experience difficulty swallowing after everything I eat, just sometimes although this does happen more and more frequently so I just give up and wait for it to pass. Sometimes I can then resume my meal but sometimes everyone else has long finished. I just found that once I get the pain I know it's completely closed at the end and nothing will get through, not even liquids. When I had the pressure test apparently the muscles were contracting violently on each swallow of water but I wasn't really aware of it. What did you do about the oesophageal spasms? I just take strong painkillers and tell myself that I'm not dying, even if that's what it feels like!

It's about thirty years ago that I had the spasms so my recollections are distant now. I think I got the spasms when I hadn't eaten for a long time and my oesophagus wanted something to grip. The only relief (until I had the operation) was to eat something that would stick in my oesophagus for some time. Pork scratchings were the best thing - I used to carry them around with me like other people carry round, say, indigestion tablets. In fact that's what the pain was like - indigestion - and I had trouble sometimes deciding whether the pain was that or a spasm. Hope that helps.

Thank you so much for those tips. I have just been diagnosed this week with Achalasia after being misdiagnosed with acid reflux since I was 14 (I'm 24 now). I am so relieved I wasn't going crazy as I was beginning to think well maybe I am bringing on the symptoms as I imagine them! I can rlate to everything you are saying above and some of those tips are what I've been doing to live with it, not knowing it was a condition. Thank you!!