i'm 11 yrs old and have Achalasia and find it hard to cope

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my name is Eilidh and i'm 11 yrs old at the moment and find Achalasia very hard to live with. i've had difficulty swallowing and gurgling for about 1 year now . sad but at the time thought nothing of it. then it got worse. so i got a barium swallow on the 9th of october and was diagnosed with Achalasia . then a week later i could practically keep nothing down and was throwing up everything i put in my mouth. ( even WATER !) so i was taken into Yorkhill childrens hospital in glasgow that afternoon . i was then a patient in yorkhill for 2 weeks as they had to put a camera down my gullet to have a look. this procedure lasted about roughly 2 hours. ( don't worry i was asleep at the time ) i have been aloud home from yorhill, but for 2 weeks only and on 13/11/08 i will then have my heller Myotomy to stretch my gullet . until then i am getting fed multi-fibre milk and water through a nasogastric tube . it's wierd i'm not hungry....i just miss food and juice so much !! sad hopefully i'll be able to eat my christmas dinner ! :?

it feels really good to know that i'm not alone suffering this horrible disorder.

good luck to everyone out there who are suffering Achalasia ! smile

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  • Posted

    I would like to say how well you are dealing with this horrible condition and you are also being very brave. My doctors thought I may need a nasogastric tube, but luckily my condition did not get that extreme, but you are very strong to deal with it, as it is not very pleasant.

    I just wanted to say you are not alone. Keep reading the forum, I check it daily and it gives me a great satisfaction that I am not alone.

    Keep smiling :D

    All the best.

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  • Posted

    i do admit that achalasia is really horrible and it is hard to cope with. :?

    then again i've only had this condition for a year or so.

    how long have you had it for and how do you find the strength to cope ?

    Eilidh xxx

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  • Posted

    I have had Achalasia for nearly 5 years and although it does get me down sometimes, I try to live a normal life and try to look at it in another way, ie I see people who have normal swallowing as weird.

    You are doing very well to go through this at 11 years old and very brave. Please keep in contact and read the forum it truely helps.

    Good luck

    P.s I got a date for my Hellers myotomy for 20 Jan 09.

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  • Posted

    it's great to hear that you've also got a date for your heller myotomy smile

    it's funny having achalasia because i also see people who can eat perfectly as \"wierd and lucky \"! and i can't imagine what it'll be like to actually eat and swallow food again :S

    i know this sounds a bit weird but do you ever bring like foamy froth up' cause this often happens to me and i dont know weather it happens to alot of people with achalasia ???

    also how have you dealt with achalasia for five yaers ??

    xx Eilidh

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  • Posted

    Hi

    I have just had my operation, hellers myotomy.I had to blend my food to begin with but im eating most things now,except bread.(its too stodgy to swallow).Im eating less than i normally do (but thats not a bad thing cause i used to eat loads before I got this horrible condition two years ago. Im glad I had the operation although I was a bit scared.okay a lot scared about what it would be like afterwards but its okay. smile.

    You are very brave to be dealing with this so young but you are not alone. Take care.

    p.s. your christmas dinner will taste lovely.

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  • Posted

    I think the foamy froth is the juices from your oesophagus... do you tend to cough a lot, because I am always coughing, espeically when I go to bed and lie down; I seem to have a coughing fit and bring up a lot of clear mucous, as well as what is blocked at the time. I beleive this is a common cause of achalasia. Also my acid reflux is a lot better now then when I was first diagnosed, which I think is weird as my condition is more severe now. I also tend to dribble (very appealing, I know) more when I sleep and this dribble has food particles in it.

    Sorry if I have gone into too much detail, but it would be very interesting to know if any others have the same symptoms.

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  • Posted

    Don't know whether I am in the correct forum but hope somebody out there can offer me some crumb of comfort.

    I have all the symptoms (and then some) associated with achalasia but gastroscopy and barium swallow proved negative. I now await the results of a CT scan when I will be given a further consultant appointment.

    I am a 71 year old lady extremely fit (should be on a tour of South America at the moment) until July of this year when the symptoms began. I have lost over 24 pounds although I have not been weighed by the medical profession so they are obviously taking my word for it and had no advice whatsoever on how to try and stabilize my weight or a diet which would provide the necessary vitamins and minerals in order to stay reasonably healthy. I went on holiday to Kenya in September, with my GP's blessing, and although I loved seeing the animals had a really miserable time at the dining table as some meals there was nothing I could attempt without embarrassment and consequently my fellow diners must have felt uncomfortable because one of their fellow diners was unable to eat. I cannot repeat that again. I now find my way at home with the help of Complan, nutritional soups, yoghurts etc. A meal out or even meeting friends for coffee is now out and I am becoming a recluse.

    My symptoms - a sensation of a lump in my chest (not the throat) actual pain when swallowing any solid food and discomfort with liquids. I have been sitting upright in bed since July and still being woken with heartburn and constant belching for 2/3 hours each night (a tip from a contributor on this site suggested taking sips of cold water and, hallelulja, this does help).

    When I wake now I find I am dribbling and must have been doing so for some time as the collar and shoulder of my pyjamas are damp. I keep getting embarrassing bouts of constant dry coughing and didn't even have time to apologise to my caller on the phone the other night.

    Where I go if the scan comes back negative I don't know and Christmas is now only 6 weeks away so this is filling me with dread.

    There seems to be no help available and I find friends and neighbours cannot believe that I am unable to eat and they look at me in disbelief.

    I am not afraid of dying but I am becoming more and more afraid of having to live the rest of my life with these symptoms.

    Any help or advice would be appreciated.

    Jean

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  • Posted

    Jean

    Although I am not a doctor, all the symptoms you describe are classic achalasia and symptoms which I am having. I have had endoscopies and a barium swallow, which suggested achalasia but I had to have a manometry (a tube which goes down your nose and into your oesophagus to look at how your oesophagus works - not as unpleasant as it sounds) to finially confirm achalasia. May be you should suggest this to your GP?

    Like many sufferers from achalasia, it does ruin your life but there is treatment out there which you can go back to a normal life. I am trying to stay positive and looking forward to my op in the new year.

    I hope this helps. Good luck to you. smile

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  • Posted

    Thanks Rie for your words of support. As a manometry seems to be the only remaining hope of a diagnosis, if the consultant doesn't suggest this at my next appointment then I will. Desperate times call for desperate measures.

    Any further suggestions or help for relief of symptoms will be gladly received.

    Jean

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  • Posted

    I went to a GI specialist in January for Oesophageal Manometry but it didn't go well and I felt like I was choking. The specialist says that I have developed an extremely sensitive Oesophagus (no doubt due to long term reflux) and, despite our repeated efforts, should could not proceed with the procedure and certainly couldn't send me home with a probe in my oesophagus for 24 hours.

    I'm awaiting my next meeting with the consultant next week, but it would have been very helpful to have been able to undertake the necessary test.

    I walked out of the hospital feeling like such a failure but I'm told that this isn't something a person can steel themself against.

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  • Posted

    eilidh

    r u still checking in to the site

    did you get your op and how r you now.

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  • Posted

    The foamy stuff coming up is normal for someone with achalasia, When i was really bad i was spitting up pools of salava.

    Coughing and dribbiling are also normal, expessially during the night when ure in bed.

    I remember once i ate a pot noodle before going to my bed and when i woke up the juice was coming out of my nose. Has anyone else had this?

    Xx

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  • Posted

    I have all the symptoms described and now at the stage where any solid food at all is thrown straight back. Still haven't had a manometry although it was suggested, along with surgery, at a meeting early August. The three medical men at the meeting appeared extremely interested in the fact I suffer from severe Raynaud's and are now suggesting Systemic Sclerosis. Has anyone else been diagnosed with this? I'm really worried. My next meeting with consultant is not until after I return from holiday, which I'm really worried about. My GP tells me I will be fine for a holiday to Canada but it is not for another 2 weeks and purely liquids, some of which I throw back anyway (including Gaviscon this morning) I wonder how much I will have deteriorated by then.
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  • Posted

    [quote:3e5d445dc8=\"Jamie Whitehouse \"]I went to a GI specialist in January for Oesophageal Manometry but it didn't go well and I felt like I was choking. The specialist says that I have developed an extremely sensitive Oesophagus (no doubt due to long term reflux) and, despite our repeated efforts, should could not proceed with the procedure and certainly couldn't send me home with a probe in my oesophagus for 24 hours.

    I'm awaiting my next meeting with the consultant next week, but it would have been very helpful to have been able to undertake the necessary test.

    I walked out of the hospital feeling like such a failure but I'm told that this isn't something a person can steel themself against.[/quote:3e5d445dc8]

    hi jamie

    hope you are reading this. I have been suffering acid reflux constantly for about 13 years. Did lots of tests and the specialist told me i have sensitive oesophagus. tried so many medicine and none of them helped.

    Please tell me have you got your problem fixed? If so what what kind of treatment did you get?

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  • Posted

    Hi Eilidh,

    You must have had the op by now!

    Let us know how it went and how you're doing.

    There's plenty of people on here can offer advise ... you only have to ask.

    Hand in there, girl!

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