JonathanDec 21, 2022
Has anyone got experience of living with the oesophageal condition #achalasia ? If you do and you have any eating/food tips I would be happy to chat. I've had a balloon dilatation and POEM (14 months ago) but still have problems swallowing food.
Show threadRammoJan 6, 2023
@Yell0wbag G’day mate! Fellow #achalasia warrior here. I’ve had POEM and dilations, reached end stage and finally had an oesophagectomy 2 months ago (very big op, 3 months off work, up to 12 months full recovery - best thing I’ve ever done!).
I can’t find much of an Achalasia community here - just us 2 plus another you can find through the hashtags.
But… have you tried FB and Insta? There are some great people on Insta and very well researched groups on FB that can help and…
Show threadRammoJan 6, 2023
@Yell0wbag …support.
Meanwhile, all the usual tips you already know, I guess: small mouthfuls, lots of water, see your specialist, fizzy drinks help, etc.
After my POEM I had multiple dilatations to break down the scar tissue and re-open the myotomy. It’s very common to ‘tweak’ the POEM with a follow up dilatation to do this.
I had a 3rd dilatation on my throat just yesterday to open up that scar tissue.
And don’t worry about oesophagectomy - it’s very rare and really…
Show threadRammo

@Yell0wbag …it doesn’t happen to many of us (< 5% I read somewhere).
Happy to chat, but take note of time zones if I’m slow to reply. I’m a Pom who moved to Aus 12 years ago, FYI.

So in short - see you specialist. Do not assume swallowing issues is normal - it isn’t. You might need a follow up dilatation - it’s very common after POEM to fix scar tissue. Don’t leave it as it might cause irreparable damage to the oesophagus. Good luck!

Jan 6, 2023 at 8:55pmWeb
Show threadJonathanJan 6, 2023
@Rammo hi there, thanks so much for replying. I have an appointment in May with my gastro consultant. The problem here in the UK is my post POEM consultations have been on the phone. Since COVID restrictions ended follow up appointments have not gone back to F2F. I didn't think about scar tissue, I'll mention it to the consultant. I am thinking of trying to get the appointment moved earlier.
Show threadJonathanJan 6, 2023
@Rammo I've noticed that the swallowing problem has peaks and troughs. I think it gets triggered every now and then and then takes a while to calm down. Since my post about it here it's just started to be less of a problem. I've been trying hard with the small sized well chewed food and sips of water for the past couple of weeks. Seems to have helped.
Show threadJonathanJan 6, 2023
@Rammo I hope you're ok after the oesophagectomy. That sounds drastic. My consultant talked to me about it when he discussed the POEM, I asked about the do-nothing option (I wasn't keen on the POEM). That was it really, in terms of if I did nothing that would be the result.
Show threadRammoJan 6, 2023
@Yell0wbag The op was certainly drastic. I’ve posted all about it on Insta if you look for me (therammo). Do nothing is what ends up in my position, for sure. I was misdiagnosed by my NHS GP when I was in my early 20s. I knew he was wrong but didn’t have the strength to push through the bureaucracy and get a better doctor. So I ignored it and hid it for nearly 30 years. But… good news is I can now eat anything I want and it all stays down!
Show threadJonathanJan 6, 2023
@Rammo that's very good. I was also misdiagnosed I think that's fairly common. I had symptoms for years and had many tests for other things, mainly looking for cancer, colonoscopy and a few endoscopies. I was told it was just reflux but I was finally referred to a specialist who identified it straight away. I'll check your Instagram. Thanks for your help, this has been really helpful.
Show threadJonathanJan 6, 2023
@Rammo as far as FB is concerned I'm not a member. I was a member of an achalasia meet up group but most of the people were quite elderly and it was an hour of listening to people's terrible problems. One also had cancer - basically could only eat ice cream! It was quite depressing!! I've paused my membership for a while, I didn't want to be another 'always unwell' person. If that makes sense.
Show threadRammoJan 6, 2023
@Yell0wbag I’ve only met a couple of others in person and they’ve been polar opposites. One knew all about their condition and just got on with it. The other was all ‘woe is me’. I stayed in the ‘ignore it until I can’t eat anymore’ camp and now look at me!
I have found the FB groups useful for info on doctors (there is a global list of good specialists, incl NHS) but if your GI does POEM they’ll be on that list anyway and will deffo be up for post POEM follow up balloon.
Show threadRammoJan 6, 2023
@Yell0wbag Its good you’re reducing the impact with smaller bites etc. but make sure you get that follow up. I used to get flare ups too, I associated them with stress but it was probably just me getting stressed when it flared up, rather than the other way around.