Hi all. I'm about to have POEM treatment for Achalasia and have been posting on other pages, but as there doesn't seem to be a 'blow by blow' account of anyones tests, treatment and results, so I thought I would put mine out there for everyone else who has to go through this crap, so they can get an idea of timescale.
I hope this helps.
Oct 2017
Hi all. Newbie here, just found this forum [biggrin]
I'm 43 years ancient and have been suffering with this cr*p for about 10 years.
I've had all the tests and have been through the 'you're making it up/imagining it' phase. I'd been taking 40mg Omeprazole twice a day and that sort of kept it in check until December 2016.
At that point things went downhill again and I eventually managed to convince my GP that I should have ANOTHER camera crew down my throat to have another look.
Part of the prep for this was I had to stop taking the tablets so it didn't interfere with a biopsy.
Oh boy, was that a mistake.....
Xmas was horrible, and I spent the new year in A+E on drips as I hadn't eaten or drank anything for 7 days.
I had the camera crew in and achlasia was confirmed....FINALLY.
I needed a pressure test but my local hospital (Lister in Stevenage) couldn't do it so I was sent up to Cambridge.
That confirmed the confirmation and Lister said I needed surgery...which they couldn't do, so I was packed off to UCLH in London.
At this point I've lost 2 1/2 stone and aLot of muscle mass.
By this time I couldn't work as I have a physical job and I'm now as weak as a newborn puppy. I'm also self employed which means I also now have no money coming in.....joy.
In November I'm booked in for a Timed Barium Swallow so they can then decide what type of surgery to do.
Hopefully it will show I'm completely knackered and that they get on with it quickly.
In the meantime I'm physically 'surviving' on tinned Macaroni cheese (which I USED to like.....), tinned stews, chocolate, Frazzles (for salt) and I can just about manage a couple of different meals made with turkey mince.
Mentally, I'm surviving with Beer and Ben and Jerrys cooky dough ice cream.
20 th Oct 2017
Went to UCLH for a chat with Dr Banks Upper GI clinic.
He read through all my results and confirmed that I need surgery.
But,
Before he decided which of the 4 versions to go for he wanted me to have a CT ( or CAT ) scan just to check that there wasn't anything else going on.
A few years ago I'd had an MRI scan for the same reason which came up clear.
I asked if there was any idea of timescale as I could no longer work and it was hurting moneywise. He said unfortunatly not (it was worth asking) so I was expecting a 3 month wait between EVERYTHING which is the kind of service I get at my local Hospital (Stevenage).
A follow up appointment was set for Jan 2018 just to keep me on the books.
I was also sent down the corridor to the vampires for a blood test.
27 th Oct 2017
I got a phone call from Dr Banks Upper GI dept !!
He asked a bunch of questions about my condition as they have a scoring system for assesing how bad it is. I later found the same type of scoring system online somewhere and my final tally was pretty high !
He said he had booked me in for the CT scan and a Timed Barium Swallow.
Do a Google search on the Timed Barium Swallow and it will show you pics of the results you can expect to see.
OOPS !!
Sorry all.
I got the dates wrong.
Everything you've read so far happened in Sept, NOT Oct.
Sorry.
Moving on......
1 Oct 2017
Right then, moving on.
On Sunday 1 st Oct I had the CT scan.
No dramas. They pump a liquid into your arm via a TINY tube and you get moved through a stargate type dohnut.
3 rd Nov 2017
Today was the Timed Barium Swallow.
This time I could see the monitor, which meant I could see inside myself, which was weird..........
A plastic cup FULL of the thick white liquid was put in my hand and I was told to drink it as fast as I could manage.
I warned then that it might come back even faster........so one of the students hovered nearby with one of those Special paper bowls.....
at 1 min they took a picture - I could see the Barium had filled up my assoff, assoff, ahem, food pipe.
at 2 mins they took another picture - it was all still there.
at 5 mins they took the last picture - and all 4 of them let out a loud gasp. Guess why.....yes it was ALL still there. NOTHING had gone through, welcome to my world.....
According to the googling I've done, when everything is working properly the food pipe should have drained after 5 mins.
5 th Nov 2017
UPDATE
Before I went for the Timed Barium Swallow I had a call form a different bit of Upper GI as they had had a treatment cancellation and were looking for a replacement patient.
The 4 treatments avaliable are:
1 - Balloon dilation
2 - Botox to relax the LES - this is usually only done in elderly patients
3 - Cut the LES is relax it perminantly - This is Surgery and you are looking at a 2 month wait before it happens
4 - POEM - same procedure but can be done by Upper GI Dept in one day.
POEM is still at a trail stage at the UCLH. They have so far done 30 over the last 5 years with a 85% complete success rate, but they don't yet know if it will have solved the problem long term. It is done on a random lottery basis from those who need surgery. If chosen then the patient has the final say.
I was contacted because they had a POEM slot and I was selected.
I've had this crap for 10 years so I said yes.
I've got the Pre-Op oppointment on 7 Nov 2017 with the OP on 15 Nov 2017 at 10 am.
If you decide to have sedation then they Don't recommend using public transport afterwards to get home. I don't have a choice, so I'll go First class on the train 
From reading other peoples post-op experiences I'm expecting some degree of pain for 2 days after the op followed by 2 weeks of swelling before I can eat normally again.
* On a Private Note * (on a public forum......)
This op is 'do or die' for me.
You CAN die from Achalaia.
I'm STILL losing weight and getting weaker every day. If the Op doesn't work then I will get worse until my organs shut down and I die.
I'm not prepared to accept a long drawn out death.
There is No 'RISK' of death. It is a Certanty. You Can't prevent it, it will happen to everybody.
It's just a matter of How and When.
************************************************
I'm Really hoping the Op will fix me and I'll keep you posted on progress
Wishing you the best outcome from POEM, and getting your life back.
I live in the U.S. and have a POEM procedure scheduled for Dec. 7. I think you were lucky that they offered this to you. IMHO, it is your best shot at being able to eat more normally. I"m in the same situation as you--I can barely keep anything down. I've been dealing with this for 16 years but in the last year it has gotten so much worse.
I wish you the best with your procedure. Please let us know how you are doing. I'd like to hear your follow-up.
7 th Nov 2017
Had Pre-Op oppintment today.
I'm booked in as an Inpatient and will be kept in overnight.
I have the option of a General anasthetic (which knocks you out completely) which will be explained on the day, and I intend to have that 'cos I don't wanna remember ANYTHING about it.
Because my Acalasia is so bad, I've been advised to only had Complan (or similar) at least 4 times a day for the preceding 3 days to make sure there is no food left in the food pipe.
I was also send down to the vampires AGAIN......joy
I've been told to report to 2 nd Podium Level to be booked in.
The Podium happens to be the side where Outpatients is, But there aren't any signs to tell you that. It's not even on the website.
Every other hospital I been to has a site plan on their website so you have an idea of where to go before you arrive. Not so with this lot.......
There are other restrictions on food and drink prep and they were all explained fully at the Pre-Op.
On the letter you get for Pre-Op it says to report in using the machines as you enter Outpatients. Don't bother 'cos they don't recognise Pre-Op appontments. Just go straight to Clinic D insread.
Oh well, only 7 days to go.............It's gonna be a long week......
14 th Nov 2017
Noon
I'm on my 3 rd day of Complan only and I've just had a phone call from Upper GI at UCLH.
It was to tell me to stop All food and drinks from NOW and to only have clear liquids. In my case that means water only.
Oh, JOY...........
Water is one of the liquids I have trouble with.
It's gonna be a REALLY long day.
15 th Nov 2017
Ok Folks, OP day.
This is what happended to me, of course it will differ a bit for each person but this should give you a general idea.
Firstly, I'll gloss over the fact that the Hospital had a sudden rush on beds the day before so there was a bit of a wait to get started....
- My wife came with me and was kept in the loop at all times -
I got to London early as I had to book in at 10 am which meant getting into the city in rush hour (I'm not a city person).
As I was early I was seen quickly by the pre-op bod in a side room to check some forms and to be handed the fantastic standard hospital gowns (two) along with a pair of VERY tight up to the knee tights.
The bod left me to get changed and wait as the 1st POEM patient was still in.
After an amazingly long time Dr Banks came in to appologise for the wait (beds) and to explain in (gory acurate) detail what he was gonna do. He also said how many people would be in the room with us, which included 3 surgens from other UK hospitals and 1 from Australia who were all being taught by him on how to do the procedure. He asked if I was alright for them to watch, my view was the more people who know how to fix this crap, the better.
The Anathesist came in and my wife and I took an instant dislike to her. It was her manner. Very buisness like with No soul. A General (go to sleep) anasthetic was the norm apparently. It would have been nice if I'd been told that for certain at the Pre-Op.
We got the green light and in I went (wife was told to kill some time, approx 1 hour, and would be contacted when I was in recovery).
The Anathesist had 2 student assistants who clearly knew what needed doing but still got bossed about. On the bed was some kind of breathable inflation sheet (??!) and the students wrapped a warming blanket around each of my leg tights.
As the needle went in I found a screw head on the ceiling light and stared at it 'till it went fuzzy.
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Some time later I came round (sort of) in the recovery room. Details are a little hazy in my brain, but I remember having an oxygen mask on and having a dry retching vomit attack. Nothing came up but apperently it wasn't great to watch. Wifey said Docs told the students what to do and it was sorted with anti sickness drugs.
I was then wheeled up to Tower floor 9 into the GI ward.
Op day - Part 2
Once I was in my booth I was plugged into the oxygen supply and given the first of MANY drips.
Wifey was given a detailed print out (which include inside photos) of the op, as I was in no fit state to look after, or at them.
I got the distinct impression that the staff don't like it if you go wandering off to the toilet when you're on a drip as no-one was doing it.....
Don't expect to get much sleep at night as this ward doesn't seem to have a quiet night shift. The lights were left on with nurses and doctors all over the place. It also gets Damn cold at night......
Most of the day was pain free, with only very mild bouts, I was put on morphean to start with.
If you get any type of pain then say so, 'cos they will deal with it.
There were no more blood tests
The rest of the day was nill by mouth.
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16 th Nov 2017
In the morning I was seen by a doc and could try a sip or two of water. As it stayed down I was then put on clear liquids only. They class that as Water, Tea, Coffee and Soup so when the food menu comes around you can only have the Soup and it will arrive on a seperate trolly about 20 mins before the lunch trolly, don't miss it.
As I could keep water. tea and soup down (you can imagine how good THAT felt) and all my ops were good I was told I'd be discharged later that day.
If you've stayed in a hospital before then you know how long that can take............so, many hours later when the soup trolly comes around again........
They were unexpectedly short staffed on this day so it took a while (I'm being polite) but I was Finally discharged at 6 pm with the letter and meds.
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AFTER OP CARE
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The meds will probably vary for each person so I won't go into it, but the general food gist is;
1 st week - Liquids ONLY - This includes Water, Tea, Coffee, thin Soups, and MOST IMPORTANT Ensure Plus milkshake type drink, 3 times a day, they supplied this (it comes in a variety of flavours but I chose chocolate for it all, I'll let you know what it's like).
2 nd week - Soft foods aswell - i.e. no burgers.........PLUS keep going for another week with the Ensure Plus drink.
3 rd week - Hopefully everything else, but be sensible :D
4 th week - Timed Barium Swallow - to see how well the Op has worked.
6 th week - Follow up appointment at Hospital Clinic.
17 th Nov 2017
I had a Really crap night, couldn't sleep at all 'cos it was too quiet !
I picked up some disolvable paracetomol on the way home from hospital as I've got a sore throat so don't want to take anymore tablets than I absolutly have to.
As I couldn't sleep I thought I'd reload the dishwasher - BIG mistake.
Just moving about iritated all my upper body muscles and I was in agony until the pain killers kicked in.
When the Doc says don't do ANYTHING for the first couple of days then DON'T MOVE UNLESS YOU HAVE TO !!
Thank you for sharing your experience. Wishing you well. Please continue to let us know how you're doing.
This was taken just after I was put on the ward. I was still a bit spaced out
Loving the picture! 
made me smile.
Thanks for sharing your accounts!!!!
Healthy karma all around!
N
Thank you so much for this information! I am a 51 year old female who is newly diagnosed after having symptoms in varying degrees for five years. Have had an upper GI and will be having an endoscopy under anesthesia mid-December. I am in the states and keeping my fingers crossed that I will be able to have a POEM. I and my family are so ready for me to move beyond this, and your awesome words were exactly what I needed right now! Thanks again, and best wishes for a speedy recovery.
22 nd Nov 2017
REPORT
A bit ahead of schedule but I thought I'd add this, it's my food intake experience.
KEY : Same = milkshake drink
Day 1 - milkshake drink 3 times only ( the milk chocolate flavour is Really nice ). The Sister on the ward didn't read my med notes properly so only gave me 14 bottles (one a day for 2 weeks) instead of 42 bottles (3 a day for 2 weeks) so I'll have to use Complan until I can get more. I found Ensure on Amazon.co.uk It's an American make but is avaliable through online chemists.
Day 2 - Same plus one tin of Heinz cream of chicken soup, it stuffed me full.
Day 3 - Same but the soup was easier to finish, I was hungry later so had a tin of Heinz spaggetti.
Day 4 - Same plus soup. In the evening I was Really hungry so had some very soggy Weetabix. I put 3 in the bowl only expecting to finish 2.........I nearly ate the bowl aswell !
Day 5 - Same plus Weetabix for breakfast, soup for lunch and spaggetti for tea.
Day 6 - Same as day 5 so far....
I've just reloaded the dishwasher but so far there's no pain
I now have appointments booked in.
Timed Barium Swallow is on 12 th Dec with follow up in clinic on 6 th Feb.