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

firegratekim

Hi . Is there anyone else on this group who has achalasia and oesophageal dismotility please. Both incurable diseases ? 

Ami2301

Hi @firegratehim welcome to the community!

I have not heard of them before, could you tell us a bit more about them please

Pippa_Alumni

Hi @firegratekim, and a warm welcome to the community! Great to have you here.

I've had a look around and you appear to be the first person to discuss these things on the community! We'll share this around, but would you like to tell us some more about them in the meantime?

Jean_OT

Hi @firegratekim

Welcome to the community.

Here are a couple of links to websites discussing these conditions and their management: 

https://www.nhs.uk/conditions/achalasia/

https://ctsurgerypatients.org/lung-esophageal-and-other-chest-diseases/achalasia-and-esophageal-motility-disorders

Best Wishes

Jean

siobhan1

Hi, I was diagnosed with esophageal dysmotility secondary to Ehlers Danlos 2 years ago... at the moment I'm trying to manage by eating sift foods or if not then someone is with me constantly while eating and I push the food down with water. There are still some days I choke on my own saliva when it goes into spasm and I just can't swallow. I've never met anyone else who has this. I have always had problems swallowing and dysphagia but over the years it's got worse. I had a cancer op a couple of years ago and the suction tube damaged by uvula and since then it's been a lot worse. I had steroids for the swelling at the time but my esophageus has never worked properly since 
. How are you getting on?

mcdonald751

I have had achalasia for over 20 years now, I’ve had a POEM procedure which was really helpful and I’d highly recommend, it would be nice to hear from other people with this disease as it’s rare and would be good to hear other peoples input about it x

ben1982

Hi, I was diagnosed with achalasia in 1999 at the age of 17. I’ve had a few procedures and had key hole surgery to cut the muscle from my gullet. I found that this helped for around 10 years but has returned as prominent as before. 

I used to drink a lot of tea, however, I’ve since cut this right down to just an occasional cup which seems to be effective. I do however drink coffee. 

I barely drink alcohol except for on holidays but I expect to suffer from heartburn so tend to take the medication. 

Fresh fruit juices and berry drinks (ribena, lucozade red berries) also give me issues. 

I have also found that garlic can irritate me too. 

The condition is absolutely life changing but I try not letting it define me. I have cut a lot out as the consequence just aren’t worth it but just prepare myself for the moments that I may stray from my standard diet. 

I have found it difficult for any information that may help, the standard drink plenty fluids with meals and chew food I find quite insulting as it is pretty obvious with anyone with achalasia that a large glass of water is standard with any intake of food plus chewing or eating small meals is clearly something advised with no personal experience to it as a simple bag of crisps or a chocolate bar can cause discomfort. I have even had difficulty swallowing liquids. 

Denzel01

Hello, I have also been diagnosed with Achalasia 3, very upset at first, but have to try and do the best I can. 
I also have spina bifida, I have had 8 spinal surgeries (fused from neck to lumbar & a couple of titanium vertebrae), I am disabled. 
I just didn't think I needed anything else to deal with seeing as I have spent all of my 53 years doing the very best I could with my spine. 
I wish everyone the best of luck and let's hope that things can only get better 🙏 😊 ❤ 

wildnat123

firegratekim said:

Hi . Is there anyone else on this group who has achalasia and oesophageal dismotility please. Both incurable diseases ? 

Hiya I do, ive had achalasia for over 15 years, yes it is incurable I'm afraid for me anyway as no muscle in my oesophagus or stomach work anymore 

Shadow750

firegratekim said:

Hi . Is there anyone else on this group who has achalasia and oesophageal dismotility please. Both incurable diseases ? 

I have this, iv just been diagnosed after 2 years of tests , your not alone xx

Denzel01

firegratekim said:

Hi . Is there anyone else on this group who has achalasia and oesophageal dismotility please. Both incurable diseases ? 

Hello, I have also been diagnosed with both of these. I have had the oesophagal dismotility for quite a few years, then last year I got acute, chronic pancreatitis (not alcohol related) & then when they were doing all their tests they discovered the achalasia.

Boyden1964

Hi I have oesophageal dismortility was diagnosed 2 years ago mine is being treated conservertly at the moment as can still manage soft food I think speech therapist can help with some of the symptoms but not quite sure how speech therapy works hope someone can give you more information on both conditions

Denzel01

Hello, I also have oesophageal dismotility and achalasia.
Like you, at the moment I am being treated conservatly. I tend to eat as much of a normal diet as possible, I just mush all my food & try to eat very small pieces of thing's that can't be mashed up. Food tends to get stuck sometimes & I have the joy of regurgitating at night!
I haven't been offered speech therapy, but I've just been thinking about it & it seems (in my head 😬) that it is a good idea.

I don't think that I have given you any useful information, but if you want to chat about what's going on, I'm no expert  but I'm always up for a chat (I know that this problem can really get you down, a LOT of thing's change with this dismotility & achalasia)
Maybe you have some good ideas that you could share with me?

Regards & best wishes 
Karen

Gillian88

Hi I have achalasia had it for 11 years only diagnosed 2 years ago. I was told for the first lot of years I had an eating disorder so I gave up going to the doctor and just lived with it until I stopped swallowing fluids and had no other option then I was diagnosed and had surgery. The surgery has been effective for 2 years and it has been great but it has now began to fail again. Which is horrible but I find it hard to get information from my doctor like long term outcomes and it’s really scary not knowing what’s the outcome of this condition what’s the life span? I have a young son at home and it scares me not knowing if I’m going to be here in 5/10 years. I have also seen some people saying things I had no idea about, my doctor told me he wasn’t completely up to date with this condition. So any advice from anyone here would be brilliant 😊

amglasgow

Hi there 

just came across this forum hope it’s still on the go .?
I’m going for endoscopy on Monday as I have had problems swallowing food for quite some time now a few years but recently progressively worse happening most days so I have drummed up the courage now for the endoscopy and feel sick at the thought of it 
think I may go for the sedation Although that also scares me as I suffer from anxiety in general
have done since age of 15 now 43
I have a young family and I’m worried about the prognosis along with the procedure 

food gets stuck seems intermittent always been long abscense between flare up but like I say now happens near enough daily at some point depends on what I’m eating but my heartburn acid reflux has been worse also
when the food gets stuck I can feel my sphincter has opened up so food stays there until I either manage to get cokes cola down and that can help push food down also helping sphincter to open up but more often now that doesn’t always help and reverting to fingers down throat for the gag response and get the food back up along with coke disgusting I know

i think it’s going to be a Achalasia or Barrett’s  Oesophagus what ever it is it’s progressing I’ve been on omeprazole for roughly 20 years it’s not working as well as it did 

anyone have the endoscopy done should I worry and prognosis anyone had good treatment 

Denzel01

Hello Gillian88

I am going to have a consultation with the professor of gastroenterology 30/11 & hopefully I'll have a lot more insight/information into the achalasia & dismotility next week. If I have any further information into the disorders then I will update on here.
I completely understand that you're feeling 

Gillian88

Hi denzel01 
I had my appointment yesterday and got bad news there is no more treatment available for me as I’m stage 4 so i am now on a strict fluid only diet. It’s a lifestyle change for sure especially being so young but it could be worse. Once the fluids stop going in it will be tube feed then peg feed. My doctor told me I will live a long life it just won’t be a normal one. I had my surgery which lasted 2 years and stopped working 2 weeks ago. I have been given angina spray to ease the pains which works. It’s refreshing to speak to people who also have this horrible condition. I hope your appointment goes well 😊

Gillian88

Amglasgow hello. 

I have had 7 endoscopy’s done they are not comfortable but they are painless and don’t take long. You will be okay.😊 there is no cure but they can offer a surgery which will help the symptoms for a while. I had my surgery 2 years ago in October but it has recently failed. I seen my surgeon yesterday 30/11/22 and he said that with a change of lifestyle I will live as long as anyone else. I’m on fluids only so really runny soup and milkshake is my only diet I’m not even allowed a yogurt as it’s to think and I can’t swallow it. I’m only 33 so it’s going to be a hard adjustment going forward. 

amglasgow

Gillian 

my god that’s Awfull 
hike  did it come about do they know ? 

How did it start ? And did it just get progressively worse and how long did it take to get this point ? 

Sorry for all the questions 
nothing worse than choking on food your trying to eat 
I’m at a point it roughly happens once a day if I drink coke it can sometimes catch it in time and the coke seems to help it go down 
water and other liquids make it worse seems coke with the gassy bubbles and what ever else is in coke seems to just wash it down if like I say I catch it in time 
get about a few seconds do t get coke quick enough it gets stuck and have to bring it back up 

I’ve had it a few years used ti be so intermittent and was too scared to do anything about it 
now I know I have to do something and find out the real reason behind it all 

I feel awfull for you your too young to be living like that 
? X

Gillian88

Mine started when I was about 19 years old I was told for many years that I had an eating disorder so I went undiagnosed for many years so by the time they discovered what was really wrong there was too much damage done. They don’t know what the cause is they think people get this due to a virus but nothing confirmed. Mine has been very bad for most of my time having it I lived on milky drinks as nothing solid would go in eventually I found a doctor who was willing to investigate and discovered what was wrong so I had a surgery which gave me 2 normal years I could eat everything and managed to gain weight which I loved.it will get worse there is no time limit on how fast, it could take years but as it gets worse you will find a way of life to suit you and it’s hard and very mentally draining. I take my son to McDonald’s and have to watch or feed my family at dinner time and I have milkshake while they have a full dinner so I really find that part hard. If I can help you with anything I will 😊

Gillian88

Also are you in Scotland?? Me too I’m in Fife x