I've had achalsia since I was 8yrs old

Hi Ackie

There are some striking similarities between your experience and my own. I developed Achalasia as a child at 10 years old and I hid it from everyone for a long time. I don’t know why either, but I have read other people’s accounts of developing Achalasia as a child and many have done the same without knowing why.

I am 30 now. I went through a period of treatment over a number of years before settling with a management process that works – I’m one of the fizzy liquid lovers. The only single thing I can’t eat is apple with its skin on. Everything else I can manage to push down with carbonated water, although it can be difficult sometimes.

I also experience often very severe acid reflux. Gaviscon and similar stuff doesn’t ever touch it. I find heat to be the best therapy. There have been many nights where I’ve spent hours in a hot shower or sitting against a radiator to relieve absolute burning agony in my back, or with a hot water bottle pressed against my stomach. I also suffer odd bouts of IBS and like you, am sure it’s all connected. This week I’ve had some sort of virus and it’s totally set off my acid reflux and IBS.

Usually I can minimise and manage these side effects with good diet and by sleeping on a high density memory foam wedge which raises me up and has had a major positive effect in preventing acid reflux while sleeping. Also, I’ve discovered that lying on your left side is a good way of preventing acid reflux and when sleeping on my left side since beginning to use the wedge, I’ve sometimes been able to get the reflux to go without even needing to sip cold water – which is good because then I inevitably have to swallow the cold water with warmer carbonated water if I sip too much.

I have also been amazed with the rapid spread of information about Achalasia on the Internet and with the emergence of groups and forums like this one. Even as recent as three or four years ago I struggled to find information online; now it can be found in abundance and highlights the such differing experiences of Achalasia sufferers and the differing attitudes and approached towards having and living with the condition around the world. Even so, Achalasia is still so rare that I have still yet to meet another sufferer in person.

Hi pokey. Thanku for replying. It's amazing how similar our experiences have been. It's good to be able to discuss this condition with someone who knows exactly what your talking about and who has experienced it. When I try and talk to husband family etc they just don't understand.

What I find now to be the most 'distressing' symptom of it is the spasms. They start in my chest and radiate outwards to my armpits arms neck and ears. If it's a bad one. I.e lasts longer than 15mins or so I find I'm exhausted afterwards. I feel completely drained.

I manage all other problems with it and do manage to eat fairly well just the odd things I dont attempt - rice and same as you apples I really struggle with these.

I think it would be very easy to let it control your life but we seem to have found ways of managing it as long as I can do that I try very hard not to let it get in the way.

I'm now just awaiting my endoscopy appt this is to check the condition if everything and they mentioned another dilatation if they think it's needed.

Hi Ackie

I can relate to your comments when, all those years ago my parents and I were never told exactly what the condition was called. Im sure the medical boffins honestly didnt know themselves and that is why we all suffered the way we did. Pokey and I have compared notes on many occasions and I think we're perhaps the only two on here who've never taken up the full medical procedures available. I know that for me , dealing with this condition has at times been very trying, but although Ive suffered it for well over forty years as I now read through the forums Im beginning to sense that in comparison to many I have to be be grateful that my side effects are really quite minimal. Like Pokey , the only way I can get my food down is with the use of large gulped down mouthfuls of (very chilled) cold water. Again,. I too have excused myself from the table on countless occasions to the point where for many many years I wouldnt entertain the offers of meals out just because of the sheer thought of not being able to get up and move away without being noticed and the ever possibility of folks asking \"are you ok\" ? all the time. To that end if I eat out these days, its only where my friends understand the situation (at their homes).

Pokey, by the way I noticed your comment that you'd never met another achalasia sufferer on a personal level. Nor me either ! I was going to mention this too and should you feel (as with anyone else, reading this, please count yourselves in) that you would like to meet up perhaps one time I would, myself welcome the opportunity to do so. Im sure we would, during such event,all have such a lot to offer.

regards to all

Mike

Hi mike. Thanku for responding. Like you and pokey I have Never met or until now ever known of anyone else with this condition, or ever discussed it with a fellow sufferer and it's quite 'eye opening' to read about other peoples experiences especially when they are almost a mirror image of your own experiences and because it is quite rare you believe yourself to be quite unique. I live a fairly normal life with this. I don't let it stop me going to restaurants Ive had it for so long I no what not to order and just make sure I have a jug of water to hand and I drink after every few mouthfuls wether I feel I need to or not as I sometimes find because I'm not indoors that one extra mouthful before the next gulp of water can spell disaster !

I also have gaviscon lying everywhere car, bedroom, handbag pockets basically everywhere.

I also find if I get a bit anxious it makes it worse. I recently got summonsed for jury service. I went to the doctors and was excused from it because of the achalasia.(there was other reasons aswell) whilst Waiting to see if I cld be excused I had an extremely bad couple of weeks eating wise.

As I've said before you learn to deal and cope with it. Lifes too short to let it rule it. We are all different with varying degrees of it I hope you all find a way to manage it.

Ackie

Dear Ackie

Let me start by saying how sorry I am to read how much you've struggled with this terrifying condition and from such an early age. I am one of the later developers of this condition (age 28 when it started) and cannot imagine how difficult it was for you growing up, especially because so little was known about the condition at the time.

I think your story highlights the seriousness of the condition (i.e that it can be life threatening). I admit that at times, I was convinced that the condition would kill me but never was I as poorly as you. Thank god that they did the hellers for you when they did.

So can I ask: did you get better after the hellers for a while? What happened that resulted in you having a dialation later on? How long did each dialation last for you? (sorry for the 20 questions- you'll notice from my previous posts that I ask a lot of questions as like you I'm facinated by other people who experience this condition).

In response to Mike and Pokey, I would definately be interested in meeting fellow sufferers in person. Please get back to me if you'd like to arrange something. I think we've all experienced benefit from talking on here so it would be nice to meet in person

Dare I say it?: Maybe we could meet up for a meal :lol:

Hi sasha thanku for taking the time to reply. I had the hellers op in 78 when I was 12. I think the first dilatation after that I think I was in my early twenties so it lasted a fair while. I have had a couple since the last was in 2002 when I also had the pressure and acidity level test.

I'm now waiting for an endoscopy appt as I was advised that because of the amount of acid I produce the cell structure of the oesphagus can change, so it's being checked I think they are also going to do a dilatation if they think I need it.

I must say that had I developed it at an older age like yourself I think I wld have been a lot more scared than having if at 8, I think the old adage of ignorance is bliss came into it's own.

At an older age u no too much and the mind must have at some point home into overdrive!

I never reallly thought about how much it affects my day to day life as I've had it for so long to me it's normal. since writing on here though I've come to realize it does affect things quite a lot. I just no what food to avoid and what indegestion/heartburn remedies work for me. Avoid spicy foods don't eat to late. Don't get too stressed! The list cld go on forever.

I hope I answered yr questions, and what I've talked about has helped you and others. With regards to meeting up depends on how far away we all live from each other, I do agree though it wld make a very interesting evening.

I've learnt to manage it well so well that I'm actually trying to lose weight!!Only a few pre hol llbs!

I will update again once I have had the next endoscopy which shld be in the next couple of weeks.

If u want to know more or further questions just post and I wil do my best to give u as much info as I know.

Ackie