Hi, my name is mcdonald751! I have achalasia and would like to get in touch with fellow sufferers

mcdonald751

Hi, I have achalasia and would like to get in touch with fellow sufferers

Ross_Alumni

Hello @mcdonald751

Wishing you a warm welcome, it's nice to see you join and that you have already gotten involved in another discussion about your condition. This is a very supportive and welcoming place so I'm sure you'll enjoy getting involved.

 I hadn't previously heard of achalasia until doing a quick search just now, how long have you had the condition? 

If you ever have any questions about the community then please feel free to ask, and I look forward to seeing you around.

annk

Hi i am waiting on a manometry test for achalasia, but i have all the classic symptoms and its horrific.

annk

Thanks Libby.

ben1982

Hi @mcdonald751, I am a fellow achalasia sufferer since around ‘99. 

It has been quite a struggle and honestly speaking other than the initial relief the key hole surgery removing the muscle of my gullet is something i wouldn’t have had done as now I suffer from chronic heartburn. 

Hope you are well and manage the condition as well as you can. 

mrsmac1

Hi. I had an endoscopy on Saturday for a suspected hiatus hernia but they think I have achalasia instead. I am being referred for a barium test and then go from there. I was told not to eat solids which was really disheartening to hear. So I am finding foods I can cook that can be blended to a thick gloopy texture so I can eat. I haven’t been able to eat or drink much of anything for the past 6 weeks and the weight is coming off pretty quick. I’m hoping for a treatment that will allow me to eat solids again. X

Alex_Alumni

I hope your treatment does allow for that too @mrsmac1 thanks for sharing with us.

I know that not knowing what something is can be quite unsettling, but hopefully you'll get more concrete answers soon, after your barium test. Do you have very long to wait?

I can imagine no solids must be quite a big change to the diet, what foods are you finding work best, if I may ask?

mrsmac1

So far I have been okay with porridge, and potatoes and meat blended. I don’t know how long I will have to wait but from my initial symptoms to my endoscopy was only about 6 weeks. I was managing to eat some solids for the first couple of weeks but then 4 weeks ago I started vomiting every day, waking up choking and vomiting in the night which is scary. In 4 weeks I have lost 16.5 lbs. I keep having really bad dizzy spells and feel really weak. I am due back to work this week after 3 weeks off, but I’m worried about it as I get exhausted just walking round the supermarket. 

Alex_Alumni

I'm glad it wasn't too long before the ball got rolling for you, hopefully not too long until the next part! Can you tell me, have you been keeping in touch with your GP and any specialists during this time @mrsmac1, as it might be worth sharing your concerns with them. 

I wish you all the best for your upcoming test, and do let us know if we can support you further.

Debs250

Hi.
I'm new to scope and looking to see who else has achalasia. 
I've been diagnosed about 20 years now so think I'm pretty used to it!!
I've had a hellers myotomy and Nissan fundoplication unfortunately it didn't go too well and I have regular dialations 🤷‍♀️🤔.
If you have any questions please ask 😃

Debs250

@macdonald751
@mrsmac1
@ben1982
@annk
Just wanted to touch base. Hope you are all doing ok on your warrior journey? 

wildnat123

mcdonald751 said:

Hi, I have achalasia and would like to get in touch with fellow sufferers

Hiya I have achalasia too I have for over 15 years, I feel for anyone with this awful condition 

wildnat123

Debs250 said:

Hi.
I'm new to scope and looking to see who else has achalasia. 
I've been diagnosed about 20 years now so think I'm pretty used to it!!
I've had a hellers myotomy and Nissan fundoplication unfortunately it didn't go too well and I have regular dialations 🤷‍♀️🤔.
If you have any questions please ask 😃

What helps you with the pains like heart attacks, really cold water helps for seconds but the pains can last hours sometimes, cold milk used to help me but not anymore

Gillian88

Hi I have suffered for 11 years but most undiagnosed as I was 19 when it started and was told I had an eating disorder. I am 2 years on from my heller myotomy and fundoplication and my symptoms have returned last week and I’m struggling to even get fluid in so I have an emergency appointment with my surgeon. It’s scary because although I have had this condition a very long time I still don’t understand enough about it and I’m a mum to a young boy and it scares me that this might be it for me. Does anybody have anything they can educate me on or can they do the surgery a 2nd time?? The wait to see my surgeon is 2 weeks away and it feels like years. P.s I’m so glad I found this 😊