Help please

[Palebon]

Hi everyone....l m an achalasia patient, diagnosed last Feb (2019). I wanna know experiences of other sufferers of the same condition, how they are coping and any advice they can offer. I had surgery and since then I have been diagnosed with peptic ulcer perforations and free air in the abdominal cavity, very painful at times. Please advise me...

[SurreyGuy]

Hello there. You don’t say how old you are but I was 21 when I was diagnosed and I am now 56. So, living with it for a long time. It is a challenging disease but I always think there are worse “out there” and it has ultimately informed the sort of person I have become.

You will learn to manage the symptoms and what foods and liquids are better than others. I found fizzy drinks (really fizzy) a life saver for many many years. I would consume up to six cans of coke/pepsi a day. My teeth are now showing the signs for that but it is a small price for the years of relief it gave me.

The disease can progress and become even more troublesome and eventually I ended up eating very little during the day so that I could be comfortable at work and eating in the evening. I also found taking a bath helped as it altered the pressure in the chest and food would go through. I also found a little bit if yoga (you tube) helped relax me and everything inside.

I had the dilatations for years and like most people these were great for a period of time and then the symptoms would return. I had the myotomy which gave some relief for a couple of years and I had botox injections which did nothing at all.

A few of us (very few) advance to a mega oesophagus. This is where the oesophagus dilates enormously. I had no choice but had to have it removed. This was 13 years ago. That is a whole different story but essentially it was fine.

So, in summary. It is a challenge but you can live a very ordinary life and do everything everyone else can as long as you learn how to manage your symptoms (it takes time).

The healthcare professionals can support you but after time you may find you know more than many of the junior staff. But, make sure you have an experienced consultant somewhere. Even if you have to travel to see them. It is worth seeing someone who has seen it all before.

Please let me know if I can assist further.

[bronydd in reply to SurreyGuy]

Thank you for your reply I shall take on board what you said regards Anne

[Palebon in reply to SurreyGuy]

Hi,

This is so wonderful and informative. I believe you had the same symptoms as I did and i will try to live as you advised. Sure

Many thanks

Regards

Peter

[catlover50]

I suffered from Achalasia for many years. At times it felt like there was a shelled hard boiled egg stuck in my oesophagus.... it wasn't so much painful as uncomfortable. I did have several dilatations which I found helpful.

As SurreyGuy said, you learn to manage the condition and use any support you can get from the professionals.

[bronydd in reply to catlover50]

Thank you l shall learn

[farful in reply to catlover50]

I have been diagnosed with Achalasia. I am expecting to have surgery soon, it will be the POEM procedure. I had HH diagnosed Jan 2019 and had a Bravo score of over 100. Had Nissen fundoplication surgery last summer. Now I have the Achalasia. Not a good meal in a long time. I am hoping for some significant improvement after the POEM, but I know it will be what it will be, and there are no guarantees. I do have a great doc doing the POEM.