Achalasia

Digestive health
1

Hi my name is Sean. 42 year old male.

I have had the symptoms of the condition Achalasia for, well must be 6 years and was diagnosed with Achalasia about 18 months ago. All cases of this condition seem to vary in degrees of difficulty, and as such mine is probably quite mild. I have all the fun that seems to come with the condition; I now quite like eating my food on the 3rd, 4th and fifth time around! (Depending on what I have eaten) Though half choking to death on occasions is a little worrying for my partner.

Now however I've come to the stage were I am constantly thinking about it, and have the feeling of food in my throat. Now eating only in the morning and lunchtime and ensuring that I have got as much food down or up before going to bed. Having to think about what food will ease its way down, is now a challenge, and gulping large glasses of water now only makes the problem worse. Darn!

So crunch time has arrived, and the reason for the post.

I had hoped to find an alternative to surgery but have so far come up with nothing in my research of the condition.

Q1. So my first question to all sufferers:

Has anyone found anything that has helped them without going down the medical route; ie Herbal remedies, Massage, acupuncture? Other alternative therapies?

Q2. Has anyone had tests to see if they have allergies to certain foods? Wheat free diets? etc. (I am lucky in that I no longer get reflux, though this maybe because of my diet and making sure I eat early in the day.)

Q3. Anyone come across any recent medical research that offers a cure. (One day they will find one, of that I am sure.... the sooner the better for all of us!). Does stress make it worse for you?

I have come to the conclusion that surgery maybe the only solution, and am now on a waiting list in Kent.

Q4. Has anyone had the surgery in Kent/south England?

I am not too worried about the prospect of the surgery, as I feel the time is now, to try and solve the problem.

Any feedback anyone has would be very welcome, (positive or negative) as I want to work out myself what the best way forward for me is.

Thank you, and I wish for us all, relaxed, enjoyable and easy eating and digestion.

Sean

2

Have tried some herbal medicines, with no success. However, that doesn't surprise me as I am no believer but at various times throughout this complaint I have despaired of the medical profession.

I have had the condition for 15 months now. Last year I had 2 CT scans, 2 gastroscopies and 1 barium swallow, all quite normal according to the reports. In September this year, after 2 weeks of only being able to get liquids down and when I started to throw these back, I was referred on to a new consultant who requested an urgent gastroscopy and surprise, surprise, at last a diagnosis, Achalasia Cardia.

On meeting with the consultant, he suggested the next procedure was manometry and botox, followed in December by surgery. Two weeks later and a daily rush to the sound of the letter box, no appointment so yesterday I phoned his secretary to enquire the length of the waiting list. Most unusually, the secretary wasn't very helpful, so today I phoned PALS and they are off to the hospital this afternoon to have a look at my notes, establish if an appointment has already been made for me and, if not, when I am likely to get one.

This doesn't seem to have a lot to do with your queries but my thoughts on the subject are, particularly if you have reached the stage I have and can no longer get any solids down, which means you are virtually living on cream soups, and milk based nutrition, such as complan, yoghurt, mousse etc and all you long for is a roast beef dinner, the only answer is surgery and the quicker the better as far as I am concerned.

Hope this helps.

Jean

3

Hi Jean,

Thanks for the reply. I have been on and off the waiting list for a few months, (as I have ummmed and arrred) and have now a date for the op late this month. Having read a great number of the posts on this forum it looks like surgery as you say is a positive move, and as you say it will be great to be able to eat again without issues. I'll let you know how it goes.

I hope that you have heard back and have a date shortly.

Thanks

Sean

4

Hi Sean

I have now been assured I will receive the appointment letter some time next week (this is for the manometry test and botox) but no indication of what date the appointment will be.

I always hoped I would never need surgery but it is amazing now how I envy you your date!

Hope all goes well.

Jean

5

Hi Sean,

Unfortunately, I can't provide anything of any value to your questions, sorry.

Having followed and contributed to posts on here for quite a while I can only say that there seems to be quite a spread of experiences.

I've not come across any mention of alternative treatments, triggering allergies or research that suggests progress in finding a cure.

What I can say, tho, is that I'm convinced that there are trigger foods. Might be different for each person but I know from experience that if I eat the wrong things (and ofr me it's mainly potato and root veg) I will increase my symptoms more than 10 fold. To me 10 fold is worth avoiding so that's what I do.

Hope this helps.

Kind Regards, Richard

6

Hi everyone.

My Name is Sean, I'm 44 and live in Littlehampton West Sussex.

after nearly four years of tests in both Worthing and Brighton hospitals and staying in for a few weeks at a time I'm still at my wits end. This has realy taken its toll on my family's and my life. Going from a 200mph 13 stone well built super fit father to two young girls and wanting get married to my amazing girlfriend, I'm now 9.3 stone weedy looking and have zero energy to do anything.

it started when my brother and i went on our twice a year trip to brands hatch to watch  motorcycle racing, you know caravan BBQ and a few beers, well on the second day we started the BBQ and I couldn't eat anything ! I normally eat a lot and finish off others food licking plates along the way. So anyway I started a can of larger and couldn't drink it, I thought I may just Be blocked up from the night before, well I couldn't drink that, and my brother said there's something really wrong with you, knowing how much I could eat I thought he may be right, next day the same, and then started being sick but not food just what looked like thick spit.

after going to the doctors and having loads of blood tests taking nearly a two years I was admitted to hospital, I was told I had celiac disease, so had to change my diet and then started to loose a lot of weight. I was even told this could be in my head, at this point my very shy quiet girlfriend went mad at the doctor/surgeon. Well fast forward a year, the doctors got it wrong and I didn't have celiac disease at all, the cost to our family food wise was not something I want to think about as I got no help at all.

i then had three endoscopys with them taking samples top and bottom, barum meal tests in Worthing and Brighton hospitals and nearly having to spend Christmas in Brighton,pleading with them so I could see my little girls on Christmas morning.

i then got told a had achalasia, that was a blow as I mentioned this years ago to my doctor. Fast forward an other year I had the ballon widening, and hell that realy hurt, I was good for a few days but soon started being sick again, so I was seen by a new surgeon and he said that I would need more tests. After my second pressure test i was found that my muscles that pass food to my stomach have stoped working and the muscle that opens to let food in( can't remember the name) is closed all the time.

i was then booked in for a heller myotomy on 1st may 2014, all went well till the surgeon came round and told me I will need to eat sloppy food again for month, well two weeks after my opp iv started being sick again. So it looks like it hasn't worked, I'm normally a really happy go lucky person and if wasn't for the love of my wife to be and my little girls god only knows cos I feel so down with no way to turn, I booked a two weeks holiday to swim with dolphins for my girls hoping I may eat normally as told by the surgeon but now I face going still the same four years on. I don't want other people to suffer like me and my family have, I don't know about you but after hearing my daughters asking Father Christmas to make there dad better and writing him letters it really gets to you.

to be fare I'm keeping my chin up for my kids and wife to be, so I'm going to keep fighting the NHS in this, I hope anyone who reads this will do the same, it's your life.