I am not a freak

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I am 28 year old female and have had achalasia for about 4 years. The symptoms came before I had my first child, but when I got pregnant the symptoms improved and my dysphagia went. 3 months after the birth of my son, my dysphagia symptoms returned. Like so many of you, I went to my GP who said I was over reacting (I work in a cancer ward, which the GP knew and they just assumed I thought it was oesophageal cancer). After 3 visits to my GP they referred me for a Barium Swallow, which then I was diagnosed with achalasia. I have had 2 botox injections, which lasted for about 2-4 months and numerous endoscopies and other tests.

I am currently pregnant with my second child and I still have the dysphagia symptoms. I have been offered the operation or bilatations. Obviously as I am pregnant I have to wait until the baby is born.

It is really nice to know that I am not a freak and I am not the only one suffering with this horrible condition. My friends and family try to understand, but I don't think they really know how horrible it makes you feel both physically and emotionally. It would be really nice to hear from people with this condition.

Look forward to hearing from you. smile

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8 Replies

  • Posted

    your definately not a freak , im a 27 yr old male who has had this now for 4-5 years , i used to play footy regularly and always was out and about .. since being diagnosed with this it has affected my whole life . In some ways it was good to hear i wasnt alone but bad to think their are others out there with this horrible condition. I have severe achalasia which they told me after i had the camera up my nose , since then i have had the dilation baloon down my throat which i thought was incredibly painful , it did work but not completely i still struggle with anything inclu water !! . i have since looked into getting the hellers mynotomy , but dont really want something that drastic , i know i cant have it my way :D to have this condition while being pregnant must be really tough ? i feel for you , hopefully will speak soon , take care
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  • Posted

    Its really hard. I am going for the Hellers myotomy once I have had my baby. I was offered the balloon dilatations but I wanted a more radical approach. I have had 2 lots of Botox which worked for a few months.

    I hope things work out for you. I felt like I was the only one if the UK with this condition, but reading other people experiences I feel lucky to be able to share my thoughts and concerns, as my family and friends, although they try to understand do not appreciate how this condition makes you feel emotionally as its have ruined my social life.

    Take care and keep in touch and keep reading the forum. :D

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  • Posted

    I have to say your a real trooper dealing with this so well , being pregnant and to have achalasia is a real tough one. I take protein supplements and vitamin boosts , just to keep up ! smile Do you ever get the spasm pains ? the only thing i found that helps with that is Gaviscon. As for the hellers mytomy I have read that it is not guaranteed and that once the op is done they cant perform on the same area twice ! which just makes me nervous .... I have a app in sept to see a consultant but not sure what to do.
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  • Posted

    Bless ya! I get occasional indigestion type symptoms, but these are mild and releaved with either sipping very cold water or Rennies. It sounds like you are really suffering, you poor thing.

    I wish you well for your appt in September and keep in touch.

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  • Posted

    Hi Rie and Cole,

    I just wanted to post and advise you both not to underestimate the benefits of the Myotomy. I was 26 when diagnosed with Achalasia, and had suffered for a year before.

    I was a healthy, active young man before my syptoms presented but then my life was turned upside down. I had difficulty with solids which worsened until I had difficulty with liquids too. I lost 5 stone before my GP was convinced I didn't just have a bad case of reflux!

    In 2007 I had the Hellers Myotomy and it's given me my life back.

    I can pretty much eat what I want and the reflux is managable.

    I realise that you might be apprehensive about the surgery, and like Cole said, It's not guaranteed, but what can you do? It's definitely worth a shot and definitely beats some of the extremes I used to have to go to to keep my weight up. I can't quite laugh yet about it; the memory of hunger and thirst are still too much, but I'm getting there.

    In short (and sorry if I sound like one of those crappy US info-mercials) it worked for me and it could work for you too.

    Good luck to you both!

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  • Posted

    Thank you ChrisAce for your advice. I am definitely going for the surgery. I can't wait to get my life back again and be able to go out and choose anything I like on a menu without hesitation.

    Thank you once again. All the best.

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  • Posted

    Hello, im so glad it isnt just me that is going through this hell.

    I have achalasia, and i also have oesophegeal dysfunction which is makeing it so painful to eat. I am usually sick straight after meals and sometimes cant even stomach water. I have the balloon diatation in November and it worked for a while. It was great, then 3 month later im back in exactly the same position. I seen my consultant on thursday, and he has referred me for the hellers mynotomy. It should be about 18 weeks that i will have to wait.

    I also get the heartburn pretty badly, and i found that the only thing that relieves it is cold milk and zantac tablets. I have also been prescribed with lansoprozole which reduces the acid in the stomach to try and prevent the heartburn and reflux, but they dont seem to work either.

    Since may last year i have lost 4 and a half stone in weight. I am a pretty big girl so i look better after loosing the weight, but when people see me that i havent seen for a while and they say ' you look great' i feel like screaming at them ask me HOW i lost the weight and what im having to put up with!!!

    Anyway, im rambling now, so im going to go. I wish you all the best of luck with whichever treatment you choose, and i hope that you are feeling better soon.

    Lucy xx

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  • Posted

    Hi Lucy

    I am really sorry you are going through this horrible condition. I am now 6 weeks post my Hellor myotomy and its the best thing I have ever done. It was a bit scary going through the op (I have never had an op before) and I was poorly afterwards due to an infection, but its well worth it now. I am hoping to get the all clear on Tuesday when I see my surgeon.

    As you have read, I have had this condition for some time. I am currently on a soft diet, but I am now actually eating things that I never could before, its just the psychological part I need to get over with. My hope is that on Tuesday, I will be able to get a take away on the way home (something I have not been able to enjoy for years) and sit and enjoy it.

    Having this forum is such a piece of mind for me. I had never heard of this condition (and I work in a hospital) and felt so lonely, but with the support of everyone on here its got me through.

    All the best hun and keep me posted. xx

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