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Hi my name is Patrick, I live in the UK and would like t...

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Hi my name is Patrick, I live in the UK and would like to hear from other people who have the condition Achalasia,I was diagnosed at the age of 30y I am now 41yr. It is frustrating that I have never been able to locate a person in the UK with this condition, and further more there was no web site for this really to take place, until NOW!! I have spoken to others in the U.S and gained a little from them, but I hope that others will join and explain how they manage their condition, plus if they have had surgery. I hope that this will be the start of sharing information and the start of discussions and to gain support. I have always had a problem with swallowing from the age of twelve. I remember one Christmas as I had an attack of the munchies and looked at the turkey, started to eat it and was in trouble immediately, I had to go to the toilet and regurgitate, this was the beginning for me as I remember. As a young boy I would always have plenty of liquid at the table, my choice was milk never water, and I would always eat my food fast, and drink the milk quickly. After being diagnosed it was like a jig saw puzzle being completed, and now I understand my problem and manage it effectively. I have bad days like everyone, but we all know the bad days are simply from hell, and i have seen my doctor and used nifedipine to relax the spasm, which is a muscle relaxant as we know. This has helped in a small way, but it tends to be a waiting game for ease to come so that I can drink and eat again. I get my GP to agree for an endoscopy each year for my peace of mind, so that I am healthy, I have had chest infections from aspirating in bed, I am concerned about my lungs and the health of my oesophageal track (barrets disease) at this moment in time my general health is good and i am in control, I plan to stay this way too, please send your information as i am keen to know as much as I can, and share what I know.

I look forward to speaking to you all.

Take care and speak soon.

[i:ce916e6cc2]This message was automatically imported from the original Patient Experience[/i:ce916e6cc2]

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  • Guest
    Guest

    Posted

    I am at home currentley recovering from an operation for my achalasia last week . Like you i have been unable to find out much about the condtion or to speak to any one who had experience of the condition. However i was lucky that my surgeon whom i was refered to had carried out the procedure although only a few times so did understand my problems. Like you i did develop a real problem with coughng at night and regurgiting food which was not a very nice experience. I was fed up having more bad days than good in the end trying to eat food that i think would go down . I was on nifedipine and that made my legs swell and gave me headaches. I eventually was admitted to hospital a couple of weeks ago unable to get anything down not even water so my consulant decided to do my op sooner than planned in Oct. Intresting you say about the endoscopy i had a few and but i was informed that this does not really show the problem only Barium and mamortary test will. The op was relatively easy although they did perferate my stomache which apparantley is a complication but apart from being NMB for a few days more not sure if it has affeted me in any other way . I am only allowed fluids at the momement until the end of the week but what a relief i can swallow freely at the momentand looking forward to icreasing up to soft diet at the end of the week and then normal!!! all being well. Please feel free to email if there is anything else you would like to know

    [i:1282360fc8]This message was automatically imported from the original Patient Experience[/i:1282360fc8]

  • Guest
    Guest

    Posted

    Hi there Patrick, I am also in the uk. I have spoken to people in the US, but i can't seem to find many uk based people. I'm 21 and my achalasia began when I was 17. It was gradual. It just started with some food getting stuck. It became quite frequent, then all the time, at every meal. Water used to help, but now it is the only liquid I find hard to drink. My symptoms worsened when I was 20, enough for me to seek medical help. It was my mums birthday, and I was eating indian curry with her and her friend (thankfully at my mums). My food got stuck, and it felt really awful. I regurgitated into the kitchen sink. The second time it happened I was sick with tonsilitus. I drunk cranberry juice, but it hadn't gone down. I was standing in my mums kitchen and it was pouring out my mouth. I couldn't breathe. I was really frightened. So was my mum. It was before I saw the doctor...and of course, you only know of achalasia if you have it, or know someone that does! regurgitation has been happening for about a year now. I am too scared to eat out. I will eat soup in a restaurant (if I am by the toilet), or crisps, in a pub, with a fizzy drink. I find carbonated drinks really help me. I find it hard to swallow water sometimes, if I gulp it. I can take a few sips slowly. I have coughed up water before. If that hasn't happened to you, it is a really horrible and painful thing. I end up in tears! I am having the keyhole heller's myotomy on the 26th september...naturally, I am terrified, but I know I will be the happier for it. Achalasia doesn't go away, but surgery eases/rids of the symptoms for at least 10 years (or 5 if you're not so lucky!). and of course, as you know, it's very rare, so we are not the luckiest of people...well if ya love your food, which I know I do. maybe i should join a gym for after surgery! i get chest pains, which wake me at night sometimes, and night time coughing, regurgitation. let me knw what happens with you with your achalasia. Im doing a lot of research on treatments, and achalasia in general. There are medications you can use until proper treatment. Where are u based in the uk? sorry for the really long essay/life story! Kia, London

    [i:05f9d3839e]This message was automatically imported from the original Patient Experience[/i:05f9d3839e]

  • Guest
    Guest

    Posted

    Hi Patrick, Hi Kia

    I've just been diagnosed with achalasia after suffering since February with swallowing difficulties. I've just been advised, today, that the only solution to help me is to have surgery. Kia I'd be really interested to hear how you got on with the op.

    Anything that you can recommend I try would be appreciated. It does help to hear of other people's experience as no-one I know knows much about this.

    Jo

    [i:38697dbd53]This message was automatically imported from the original Patient Experience[/i:38697dbd53]

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