Is there anyone else on this group who has achalasia and oesophageal dismotility

2

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  • amglasgow
    amglasgow Online Community Member Posts: 8 Listener
    Yeah I’m Scotland also argyle and Bute 

    feel Teri me for you thankfully for me I’m not at that stage 
    I can still eat and drink - just choke that once or twice a day depending on what I’m eating and how much I chew or quickly I eat it 
    some days I can feel it it’s going to happen and make sure I have a drink next to me 
    not the best - can’t believe how bad it’s been for you though 
  • Gillian88
    Gillian88 Online Community Member Posts: 12 Connected
    I’m originally Irish but have lived here for 12 years. I have had a few tears after yesterdays news but after a couple of days I will be fine I’m sort of used to it with having it so long, I think the 2 years of being normal and then for it to all fail so suddenly again is why I’m so upset. I was glad to find others because it’s hard trying to talk to people who don’t understand it. I hope all your tests and appointments go ok 😊 x 
  • amglasgow
    amglasgow Online Community Member Posts: 8 Listener
    Thanks Gillian 


    What was the surgery you had if you don’t mind me asking was it a long recovery ? 
    And what can’t they do anything else 

    stay strong 
    I’ll let you know how I get on Monday 
    if I make it through endoscope lol 
    x

  • Gillian88
    Gillian88 Online Community Member Posts: 12 Connected
    It was a heller myotomy and a fundoplication I had done it was a 4 hour surgery with a 6 week recovery but it was keyhole and I was home to recover the day after. Recovery was great very little pain and I was able to move about and do small tasks…
    aww I will be thinking of you on Monday, try not to panic it won’t hurt but it is very uncomfortable and there will be lots of gagging..

    I have no options left as I have lots a scar tissue inside so it is not possible to operate on that because it would just rip apart it’s not strong enough to withstand another repair. But I will just have to look out lots of tasty soup recipes close my eyes and imagine it’s something better 😂
    x
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,922 Championing
    Best of luck @amglasgow. How are you feeling about it at the moment?

    Please don't hesitate to let us know if we can do anything to support you. We are all here for you and listening to you.

    You don't have to face this, or anything else, alone if you don't want to. Take care for now and we will look forward to, hopefully, hearing from you again soon  :)
  • amglasgow
    amglasgow Online Community Member Posts: 8 Listener
    Thank you 

    yeah feeling anxious and sick about it 
    will feel even worse tomorrow I reckon lol 
    but wil be glad to get it done and hopefully get to the bottom of my problem and see what is going to happen going forward and what is causing the problem 

    will let yous know how I get on 

    thanks 😊 
  • Denzel01
    Denzel01 Online Community Member Posts: 10 Listener
    Good luck for tomorrow, I understand how frightened you're feeling, I was the same when I had my first Endoscopy. The procedure is a little uncomfortable, but it doesn't take long 😊.
    Once it's over you'll be thinking "that wasn't as frightening as I thought it would be". 
    I hope all goes well & that you get diagnosed from the Endoscopy 😊
  • amglasgow
    amglasgow Online Community Member Posts: 8 Listener
    Thanks Denzel 

    appreciate all the responses guys hope your all doing well as can be 
    and I will hopefully be back on tomorrow night and let you all know how it went and if any further forward getting diagnosed on what’s going g on 

    think reading about it it does point to achalasia but suppose no point trying to self diagnose Until I know for sure 

    Speak tomorrow guys 😊
  • amglasgow
    amglasgow Online Community Member Posts: 8 Listener
    Good evening guys 

    just a wee update 

    got the endoscope done this morning
    aww that throat spray sent me right into a panic and even the doctor asked if I wanted to continue lol aww didn’t like it as I wasn’t expecting something that strong and the taste yuk
    thoight my tongue had doubled in size they had to reassure me everything was Normal and just to concentrate on breathing so I said ok let’s just get it done 
    Good also the sedative so didn’t feel the tube go down and think I slept through most of it 
    so for anyone reading this thread take the sedative and try relax with the throat spray 
    weirdest thing I’ve had but I managed it I remember burping a few times through it but nothing much else 

    diagnosed as having a hiatus hernia and oesophagus ulcer which is very irritated 
    so really was a good diagnosis considering what it could have been 
    biopsy was taking of ulcer to check for signs of barrets oesophagus so I await that coming back 

    I’ve to take 20mg omoprazole in morning and night along with gaviscon after every meal and at bedtime 
    for 8 weeks and then I have to go back and have procedure done again to check ulcer is healing 
    and hernia I don’t think they’re going to do anything about even though that’s the cause of my sphincter not opening and working correctly and causing GERD which has caused my ulcer 

    seems they are happy for me to take the medicine and I’ve to change my diet etc smaller meals more frequent and no eating a few hours before bedtime 

    although harder said then done when your working all day and and we have 3 small children who get here dinners first and we sit down to ours once we have dealt w it h them and got them ready for bed so we can relax and have dinner 

    I’m sure we will work it out 
    can’t believe I’m going again in 8 weeks 
    but glad it was not a scarier diagnosis 
    hoping biopsy all comes back clear 

    I know a few of you guys are going. Through hell like Gillian not been able to eat at all 
    so I am blessed so far it’s not been anywhere near that level and I hope you guys stay strong and get through it 

    will continue to monitor this wee thread and appreciate everyone’s responses and opening up on there ongoing fight with dysphasia 
    man’s will happily continue to chat to anyone who would like to get anything off there mind 

    thanks 

    Andy 



  • Gillian88
    Gillian88 Online Community Member Posts: 12 Connected
    Aww I’m so glad you got better news!! I have been thinking of you all day.. 😊 x
  • amglasgow
    amglasgow Online Community Member Posts: 8 Listener
    Thanks Gillian 

    a few lifestyle changes to be made and hopefully be on the mend 
    do anything to keep myself out that hospital lol 

    hooe your doing well as can be and looking forward to Xmas even if it’s just for the time spent with friends and family 😊 x
  • Gillian88
    Gillian88 Online Community Member Posts: 12 Connected
    Thank you 😊 have a nice Christmas 🎄 xx 
  • Eleanor01
    Eleanor01 Online Community Member Posts: 2 Listener
    Hi, I have achalasia. I had intermittent symptoms for 5 years and then following self diagnosis in Dec 21, I was medically diagnosed in Feb 2022. I had the POEM treatment in May 22 with symptoms so much better currently. The result was I have circa 10cm of the muscle and throat separated to enable swallowing. Like others I need more fluid with food and now use gravity to move meals through the 10cm that does not work. Pre-operation gravity made no difference and the disease just has primacy in the end regarding if you could swallow or not. Life is much better post operation. Has anyone needed the operation more than once as the disease continues to grow up the oesophagus? If so, how has it been with even more cut post operation? 
    Amglasgow- the endoscopy is ok. It is worth it and if you can do not be sedated since they can have slightly altered test results. 
    Gillian88 which surgery did you have, why the sudden change/failure? 
  • Gillian88
    Gillian88 Online Community Member Posts: 12 Connected
    Hi eleanor 
    I had a heller myotomy and a fundoplication so 2 surgeries at the same time with the same sort of idea of gravity taking the food down. My surgery gave me 2 years of being able to eat completely normal there was nothing I could not eat which was great lol.. about 1/2 months ago I started to struggle one day and the food came up and since then I have been fluid only I cannot even have a yogurt as it’s to thick so I’m liquid diet now. I went to see my surgeon and unfortunately he told me the surgery could not be done a second time due to scar tissue and that would be to much of a risk so basically I’m at the point now where it’s just a lifestyle adjustment which I’m getting used to, lots of crazy flavoured soups not all good tastes bad liquidised lol.. I hope you get longer out of your surgery I hear people can go 20 years before anything starts to go wrong but seems I’m just not allowed the luck 😂 any questions you have I’m happy to answer x 
  • Eleanor01
    Eleanor01 Online Community Member Posts: 2 Listener
    thank you Gillian for being so open about it. I agree, you just never know what will happen next.  Through some of these conversations it gives me strength that we are not alone although it is rare to be finding people. Well done with coping, it can’t be easy. Keeping an element of humour is good. I was wondering if there was anyone out there that had had the treatment where the oesophagus had been removed and stomach joined nearer the back of the throat. They did warn me that might have to happen if it carried on spreading. 
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,922 Championing
    I hear the power of hearing other people's lived experience @Eleanor01, especially when it is similar to your own. You are never alone, especially not here on Scope's forum. 

    Hopefully, if someone has experienced this treatment they will be able to respond to you soon. This is not something I have experienced.

    I just wanted to acknowledge your response, particularly because I also value the power of hearing other people's lived experiences :)
  • Denzel01
    Denzel01 Online Community Member Posts: 10 Listener
    Hello ❣️ 
    Thank you @L_volunteer, it is always good to hear that there are people out there listening to us. It can be a strange, lonely place going through everything. 
    Great work @scope online 
    Much appreciated support 🙏 x
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,922 Championing
    I hear you @Denzel01. Please don't hesitate to let us know if there's anything else we can do to support you  :)
  • Denzel01
    Denzel01 Online Community Member Posts: 10 Listener
    @L_Volunteer, thank you very much 😊 🙏 
    Going to be a lot to deal with by end of March 2023!
    Got my Neurosurgeon consultation, gastroenterology consultation & cardiologist consultation!
    Just seems a bit much at times (don't mean to sound "woe is me!:)
    Thank you for answering me ❣️😊🙏 x
  • Gillian88
    Gillian88 Online Community Member Posts: 12 Connected
    Denzel01 good luck! Hope everything goes ok for you 
    😊 x 

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