How I deal with Achalasia

Digestive health
1

Hi,

I thought I'd share my experiences, they may be useful to someone.

I was diagnosed with Achalasia in 1997 when I was 30 and had the laparoscopic Heller Myotomy (keyhole surgery to relieve the muscle tension).

The operation wasn't as bad as I expected and the recovery went well.

The main point is that it relieved 90% of my symptoms, so for anyone given the opportunity ... TAKE IT. I've recovered the weight I lost and can go out for meals now without embarassing myself, my wife and people around me.

Since then I have been experimenting to find the best way of dealing with the remaining symptoms.

Discomfort when eating ..... for me 2 things help .... drink cold liquid before eating and eat carefully, consciously and a little slower than normal.

Pain in the night .... for me again 2 things help ..... take ibuprofen and drink really cold (ice cold if possible) water.

Now, there's one other point which, for me, is the biggest of all.

I try to avoid root vegetables and by far the worst of all ..... potato ..... and especially in the form of chips.

I can guarantee that if I eat chips, I will almost certainly have problems swallowing the meal. And I will, with absolute certainty, suffer in the night at some point in the few days (maybe up to 4) after eating.

The more potato I eat the more frequent the symptoms occur and last.

If I detox from potato then, after about a week I rarely get the symptoms.

Has anyone else found similar triggers with such a profound effects?

2

My hubby (39) has had achalasia for about 7 years. Took a while to diagnose. He's had dialations (at least 5) and Botox x 2. Is currently in hospital and, I hope, will have a myotomy, sooner rather than later.

We couldn't work out what triggers his episodes of night pain, regurgitation etc. He tried cutting different things out (beer, acidic foods, spices, rich food, dairy food, even quit smoking) but we never considered potato. It's obviously very starchy so should have thought of it. :?

None of the above worked btw so he now eats & drinks what he wants - his oesphagus sometimes has other ideas though. Bread doesn't work very well.

He hates water but like a good wife I nag him to drink it. :wink: But he still won't. :shock:

Will try out the ice cold water though. What's the rationale behind that? It would reduce any swelling present....?

Reading all these posts, it's a relief to know that there are others going through EXACTLY what he is, but there is hope for him if the myotomy with fundoplication has 85%-95% success rate. He has GORD (reflux) anyway so he knows he'll be taking medication for that forever. At this point in his illness, the benefits outway the risks, I think.

3

I'd love to hear how you get on with the potato experiment.

It took a long time for me to spot the link, but then it was so obvious I felt stupid for not seeing it before. Anyway, I can categorically say it works for me. Reduced episodes from 1 or 2 a week to less than one a month.

The only thing I can say is that ice cold or very hot drinks seem to 'shock' my insides into submission. I know it sounds rediculous but for me it works.

4

Hello, I am hoping that someone can help.

I have had trouble swallowing for 1-2 years ( difficult to remember as I kept varying my diet)

I have had a barium swallow and an andoscopy whic showed dysmotility and ?achalasia. I found this website and hope someone can help.

I take 40mg of esomeprazole daily and lots of gaviscon. I have liquidised food and lots of drinks to wash it down. I was told if it got worse they would dilate the oesophagus and hope that would help.

I ahve asked to go to the hospital to see the specialist again - so am waiting for an appointment.

Any thoughts what I can do?

5

Hi Sandra, welcome.

There's lots of posts on this site with experiences and advice, but I have to say the bottom line is you need to do whatever works for you and you're comfortable with.

I think you'll see on here that most people tried most things (including varying diet and drugs) and not many found relief in those areas.

Generally for achalasia there's 2 options for treatment .... dilation or surgery.

As I understand it, dilation is for less severe cases and will most likely need repeating after a few years. Now, if that works for you then great.

Alternatively there is the more permanant treatment of surgery. Many people are scared off by this but I think you'll find on here everyone who has had it were so pleased they did. Yeah it's scarey at first but, pluck up the courage and do, and you wouldn't regret it.

If you're not offered the choice then make sure you ask. Get the information and then decide for yourself. The operation is caled \"heller myotomy with fundoplication\" (escuse the spelling). And it can be done \"laporoscopic\" (i.e. keyhole surgery).

I was so pleased with the relief it brought and the surgery was no where near as bad as I thought it was gonna be.

Let us know how you get on :-)

6

Hello Richard S.

Thank you for answering. YEs I have read other's experiences and it has only been suggested that dilation may make it a bit better - but would need to be repeated.

I have not seen the specialist yet - I have not got a date yet.

I have NOT tried eating less potato. I think Most things I have I eat with mashed potato as they 'go down' easier!

I can't eat rice - but can eat pasta - so maybe that's the answer! I will try.

I'll let you know when I get an appointment at the hospital.

7

Hello Richard S.

I have just had my appointment throught to see the specialist. Again I have no chance to talk to him as the apointment is for an oesophageal dilation.

I would have liked to talk to him and see what options there were because last time I don't think he even knew my symptoms and he didn't ask me. Have you had a dilation? Is it okay?

I would appreciate some advice.

8

Hello Sandra,

I have had achalasia for 3 years and had the hellors myotomy and fundoplication last september.I have not had any dilatations, consultant suggested hellors straight away and after reading everything i was happy with this.

If you want to speak to consultant then phone his secretary and get an appointment, like richard said there are two options.your consultant might try dilatation first. but its your call..its always a difficult decision either way.

9

p.s. your swallowing will be much better whichever option you go for.read these posts for support.

10

Hi

I will try the dilation and hope it makes some difference. If I had not found this web site I am sure I would not have found anyone to talk to about this. It is reassuring to know that others have had the same treatment and have benefitted from it.

I will let you know how I get on. Thanks

11

Hi

I have been searching the 'net for so long looking to find people in Britain who have experience of living with Achalasia!

My 20 year old daughter began suffering this condition just 9 months ago and finally had it diagnosed in April following a rapid deterioration and losing 6stone between Christmas 08 and June 09.

I am looking to chat to any other mums to find out how they have coped with supporting their child through this - especially how they cope dealing with the consultants & surgeons who seem to drag their feet in treating the symptoms !

If you can give me any advice please contact me -

Many Thanks and good luck to each of you x x

Patrice

12

Hi Patrice

I found just reading the experiences of other people helps a great deal. I can not give advice to anyone as although I have had gradually worstening symptoms for nearly 2 years I still have not spoken to the consultant about it - only my GP.

I will be able to tell you about the dilation - as I am having that done on 1st July.

Hope all goes well for you.

13

Hi Again,

I was a little lucky really 'cos my consultant actually suggested the operation rather than dilation. As I was quite young (30) and quite healthy he felt the operation was a more permanent solution.

I can only say, after reading everything on here, I'm glad I went that route :D

I know it can be quite scary but seeing the bigger picture, the scary bit only lasts for a short while, the improvement in health lasts for much much longer :lol:

I only found this site many years afterwards.

I hope this ability to discuss with others helps those facing what appears to be an uncertain future.

As for advice to parents, one of the best elements I could point you towards would be diet. As I said in an earlier post, there are some food that trigger the symptoms. Help to identify these. There are also some ways to improve the ways food is eaten - some people sugget sfixxy drinks with meals. Again help them work this out.

I found that keeping a detailed diary of bullet points of food and symptoms (not feelings and moods!!!) helped me to spot patterns.

Sandra, I'd really try and get in touch with the consultant with your queries. To go in for treatment with outstanding concerns is not an ideal situation. I'm sure he has considered the alternatives, just not explained his rationale :roll:

Let me know how you get on

14

Hi Richard

How can I contact the consutant? I really don't know his name as it not the same one that did the endoscopy to start with. It is a bitr like fishing in the datk and is scary!

I am inclined to think that the dilation may help a bit - it should not make things worse. If it makes things just a little better I will go for I'll let you know how it goes.

15

Hi Sandra

if you phone the hospital and ask for the upper gastroenterologists secretary, they should be able to tell you which consultant you are to see.

Hi Patrice.. once i was diagnosed i was offered the op a couple of months later. Has your daughter been offered the op yet..

If she is not able to tolerate fluids then she should get further advice.....again let the consultants secretary know if she deteriorates while she is waiting...im also a nurse so i know its sometimes a case of letting consultants know if things deteriorate.or keeping in touch with g.p. for worsening symptoms and rehydration advice.im sure theyd want to know if she cant tolerate anything.

16

Hi Again All,

Ellis, I'm really pleased you've admitted :D that you're a nurse. It adds hugely to the trust in what you're saying!!!!

Sandra, I'm sure the dilation will help and get you back on the road to normality. 1st July isn't too much longer to wait ..... I'm sure all will go well. Please let us know how you get on. And don't forget, while you're there ask about the op .... just in case it becomes an option for the future :-)

17

Hi Richard, Ellis and all

Sorry I did not get on line before now - I am now 19 days after my dilation and my swallowing has improved quite a lot.

I had it done under general anaesthetic - so was painless - but I had an extremely sore throat after it - they took biopsies and photos and then dilated the 'tight' bit.

I am now managing small amounts of minced up meat - I can't manage much at a time - but so far so good! I wash everything down with sparkling water - I find that helps. Also lots of gaviscon if something feels stuck - which it is doing less often.

I keep fancying different things to eat and so am experimenting with small amounts of things - and if they go down- fine - if they are difficult - I stop and will maybe try another time.

Dilation was good for me - but I still have to watch what I try to eat and concentrate while eating- but I can vary my diet more now.

Lets hope it continues to improve!

Best wishes :lol:

18

Hey Sandra,

Glad to hear all is progressing well .... small steps of course :-)

I'm still keen to hear of experiences others have in dealing with the ongoing symptoms.

Fizzy drink does seem to be a winner :ok:

No takers yet on any other ways to avoid the symptoms .... maybe I'm a special case on the potato thing?

Kind Regards ..... Richard

19

Hello all

Thank you all for writing about your experiances with this condition.It took about 18 months to diagnose that I have joined the club as it were.

It started in summer 2006 with what felt like very painfull contractions in my chest it seemed like my throat wanted touch my stomach :yikes:

Out of desperation I drank some cold water and thankfully it helped and still is my way of dealing with that bit.Then came a lack of appetite and difficulty eating my food.

After my referal came the 1st round of tests, tubes, barium swallows etc with no real conclusion exept Candida in my Oesophagus. :shock: why?Then came the next round and the conclusion was drawn Achalasia :wah:

I have been offered the Hellers Myotomy.

Using cold water to manage the spasams which have become less often but do seem to be triggerd by stressfull situations and being very patient with meals has enabled me to maintain my weight although eating socialy can be difficult some times.

Avoiding any dryish meats is a must for me, chips can be difficult as can Lager or anything that fizzes up as it goes down the hatch :cry:but find boiled or mash potatoes as with most veges fine.If you are still with me many thanks, so pleased to have found you to share this with :D

Robert

20

I had Hellers Myotomy on 1 July. at age 64. In consultation it was decide this was the best option. It did not go fully to plan so I spent 5 days in hospital. no big deal. If any of you have this procedure you will lose weight and feel very weak when you go home. In all I have lost 2stones and my strength. Life will not return to 100% normal. It will be a lot better. My wife and I have not been out for a meal in over a year for fear of being blocked and having to bring food up to get some relief. My surgeon has done several procedure's with good results. Although it is early days the out look is looking far better than the past.