Achalasia and POEM treatment in UK

Posted , 10 users are following.

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.

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  • Posted

    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.

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  • Posted

    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.

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  • Posted

    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.

     

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  • Posted

    OOPS !!

    Sorry all.

    I got the dates wrong.

    Everything you've read so far happened in Sept, NOT Oct.

    Sorry.

    Moving on......

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  • Posted

    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.

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  • Posted

    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.

     

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  • Posted

    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 smile

    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

     

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    • Posted

      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......

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    • Posted

      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.

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    • Posted

      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.

      ----------------------------

      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.

       

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    • Posted

      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 smile

      The rest of the day was nill by mouth.

      ---------------------------------------------

      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.

      --------------

      AFTER OP CARE

      --------------

      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.

       

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    • Posted

      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 !!

       

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    • Posted

      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 smile ). 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 smile

      I now have appointments booked in.

      Timed Barium Swallow is on 12 th Dec with follow up in clinic on 6 th Feb.

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    • Posted

      24 th Nov 2017

      End of Week 1

      After I got home I only got Massive acid pain 3 times. This was due to the Hospital pharmisist 'know-it-all' ignoring what my doc had prescribed and changing my meds.

      The docs said I needed Omeprazole, twice a day for 2 weeks, then carry on like that until my follow up appointment, which I was on anyway.

      Miss know-it-all said I needed Lansoprazole instead for 2 weeks, even after having read my medical record which showed that - yes, I have had it in the past and - no, it didn't work and had no effect on me at all.

      I'm SURE the fact that it is alot cheaper for the NHS to buy in had nothing at all to do with her decision - oh no, of course not......

      Anyway, after 3 days of agonising acid pain (in which I caved in each time and took Omeprazole, which then killed it after 20 mins) I decieded to ignore Miss know-it-all and switched back to Omeprazole.

      Hey Presto, no more acid pain.

      As for weight gain in the first week. I've gained 4 lbs.

      I know it's not alot, but considering I've mainly been on a liquid diet and before the op I was losing the same amount every week, I take that as a good sign.

      Also, NOTHING has come back up since the op smile smile smile

      Technically, doc said I could go back to work after 1 week. Now, that might be fine if you work in an office. I don't.

      I'm a self employed Piano Tuner which means I need aLot of strength in my arms, piano tuning pins are damn tight and the casework I need to remove can be quite heavy aswell. My tool kit can't be lifted by a flea either.

      I've told all my returning customers that I'll be working again in June 2018 (I hope to be back quicker than this but don't wanna push myself) and they've all been fine about it. Even the 3 schools that are chomping at the bit for me to go see them.

      Roll on Week 2 and soft food..........

       

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    • Posted

      Glad to hear that you are improving and have gained 4 lbs in one week. That's actually fantastic. I'm in the same boat that you were, losing weight quickly and can only have liquids. My procedure is Dec. 7.  

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    • Posted

      Maya: Hi! 

      Did you have the POEM? Please share the experience. I am setting up mine for January in Brazil due to inexperience in the States. I'm in California.

      Anna 

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    • Posted

      Anna68652,

      My POEM procedure is scheduled for Dec. 7. Had a pre-op appt. yesterday. Everything looks good. Having procedure done at Memorial Hermann Hospital in Houston, TX. It's not true that the doctors in the States don't have experience. There are several clinics/hospitals around the country where they are doing it. I'm lucky that my doctors are 2-1/2 hours away. At least, within a day's driving distance. I'll report to the forum after the procedure. Hearing other people's experiences with POEM have helped me a lot.

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    • Posted

      1 st Dec 2017

      End of Week 2

      That went fast.

      Over the last week I've gained 3 lbs

      I've recently been going for short walks and I dug out an old cycling machine thing to build up my leg muscles.

      Food has now returned to normal, Last night I had a PIZZA !!! ( for the first time in over a year...)

      I can now eat bread again aswell as rice and all the other food that I had to give up on.

      The only food I haven't tried yet is cake (I like cake) and Ice cream.

      I'm nervous about ice cream as that is the most likely to cause acid burn. I might give it a try in a few weeks time.

      I only occasionly get pain and that is usually muscle pain. As I get better I wanna do more, but I know I have to pace myself, or I hurt.

      My wife says she can't believe how well I'm looking these days and my daughter likes hugging me again as I'm no longer a bag of bones. I'm also taller now as apparently I used to slump everywhere.

      I've decided that once I've built up my body weight to 12 st 7 lbs then I'll start using my keep fit weights, I'm currently at 11 st 13 lbs

      I weighed my work tool kit and it is 14.8 Kg. I'll go back to work when I can comfortly carry that around in one hand.

       

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    • Posted

      Way to go!!!

      Pizza, bread, rice--these are the things I long for and dream about eating again. Keep the info coming. I am 6 days away from my POEM. I'm glad you are having so much success.

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    • Posted

      8 th Dec 2017

      End of Week 3

      The weeks are now flying past smile

      I gained another 4 lbs.

      I'm now up to 12 st 3 lb.

      I had a cupcake last night smile smile smile

      A couple of days ago I fancied going for a drive to build up my staminer for going back to work. I went to Leciester and back, up the M1. It was a 3 1/2 hour trip and it didn't wear me out at all, before the op I wouldn't have managed anywhere near that.

      I've not had any pain in the last week, until today.

      Yesterday I put together a weights bench, so lots of bending and twisting as I bolted things together.

      I now have pain in muscles I'd forgotten I had sad

      I think I'll take the day off.

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    • Posted

      12 th Dec 2017

      Today was the Timed Barium Swallow post op test.

      Unfortunatly, after 5 mins there was still some of the liquid left, about one quarter of the food pipe, but it was only the thickness of the food pipe.

      On the pre-op test the food pipe was Huge, so although I'm not completely fixed there has been a Monster improvement.

      Next is the follow up with Dr Banks in Feb.

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    • Posted

      Could you explain that a little more? What do you mean it was only the thickness of the food pipe? Perhaps, it will continue to get better over time. You might still have swelling. Is that possible?
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    • Posted

      I wouldn't call it swelling. When I drank the Barium it filled the food pipe with a uniform thickness all the way down, there wasn't any ballooning. Imagine filling a clear tube with a dark liquid while holding your finger over the end, then letting the liquid slowly out. After 5 mins there was still roughly a quarter of the Barium left. (I didn't measure it, 'cos I had to keep still).

      It was going into the stomach, just not as fast as it should have. Hopefully it wil get better over time.

      I had both the tests under the same conditions......by not taking one dose of Omeprazole before it........so I could get a clear reading of my condition without it being clouded by medicne.

      The POEM procedure is still being done as a trial at this hospital and they've only done 32 so far (including mine) so don't yet know how well it works over time. I'm happy to be a 'lab rat' for a few years so they can get long term results and improve the procedure.

      I've done a terrible drawing to show what I saw on the monitor.

       

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    • Posted

      Great drawing, are you kidding? Very clear. Well, no ballooning is certainly an improvement and I hope food will go down more quickly over time.

      I was supposed to have the POEM on Dec. 7 but when they looked in my esophagus it was very inflamed and scarred causing a stricture. That's why I couldn't eat and it had been getting worse. The LES was loose so they didn't think a POEM was necessary. My esophagus has to heal now and then they'll do another balloon procedure to open up the stricture more. Right now I'm eating soft foods with no problem and I'm on a high dose of PPIs to stop the acid reflux. I had to put bed risers under the head of my bed, which is helping a lot b/c most of the acid reflux is at night.

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    • Posted

      Bummer. That's not news you wanna hear.

      I had to have 5 pillows under me so I could sleep sitting up, which helped with the acid reflux.

      2 nights ago I couldn't get comfy so took one of the pillows out. Much better, and no acid pain.

      Wishing you the best for the future.

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    • Posted

      8 th Jan 2018

      I'm back at work now smile.......well, I tuned a couple of pianos in a local school and my arm muscles didn't complain too much, so I'm now booking customers in.

      A couple of days ago I had some ice cream............NO acid reflux cheesygrincheesygrincheesygrincheesygrincheesygrin

      It would be nice to get off the tablets but I'll see what the doc says in the Feb followup appointment.

      I occasionly forget to take one and it doesn't have any bad effects (unlike before the op) so HOPEFULLY I'll be able wean myself off them over time.

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    • Posted

      6 th Feb 2018

      Today was the 1 st follow up appointment since the op.

      Before the op I was a score 12 ( the highest and worst you can have ).

      I'm now a score 2 smile

      My Doc says he would prefer a score 0 ( as would I ) and he thinks the timed barrium swallow test was probably done a little early considering how bad my condition was.

      I'm still struggling abit with bread, I can only have 2 or 3 slices a day, and rice 'sometimes' gets a bit jammed if I have too much. He says I've probably got some scaring and wants to have another look inside ( oh goody ). If there is some scaring then he can use a balloon to 'crack it' ( abit like a scab ), this balloon is not the same as a dilation op but is along the same lines.

      Oh well, something to look forward to.........

      About a month ago I tried to wean myself off the Omeprazole. I was on 40mg twice a day so I tried to halve it to 40mg once a day. After 3 days the lump feeling was back in my throat so I gave up and went back to plan A.

      Doc says most people ( who weren't as bad as me ) can come off the tablets straight away, so he prescribed me some 20mg tablets so I could experiment with the dosage.

      I'm now taking 40mg in the morning and 20mg in the evening. I don't have the lumpy feeling in my throat so I'll stick with this for a while before I go down to 20mg twice a day.

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    • Posted

      Thanks for the update; I get the feeling you are happy and positive, so thats very nice to hear!smile ... am considering POEM myself so v helpful to follow ...

      How has exercise level effort been? Just out of intersst.. 

      Warmest,

      Neil 

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    • Posted

      I got stronger really quickly. Can happily do about 20 bench press reps with 20 Kgs on the bar. Not had alot of time for weight work recently 'cos I've been massivly busy with work. First few weeks of working again hurt as I was using muscles that didn't want to be woken up.....My tool kit (which now weighs around 15 Kg) is getting lighter everytime I use it biggrin

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    • Posted

      Hi... Sounds really good! The sun is certainly shinning for you!smile ☀️

      Will look fwd to more updates. I am sure many others will too.  Especially re your PPI progress.. 

      Healthy karma all around!smile 

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    • Posted

      27 th June 2018

      Ok Folks, I know it's been a while...

      I had the camera crew in a few months ago (can't remember when) and Dr Unprenouncable said the LES was tighter than he was expecting, which would explain why I'm still having a few problems.

      I've recently dropped my Omeprazole down to 40mg a day and so far so good. I had the familiar 'he's changed something' feeling in my throat on day 2 but that 'seems' to have gone now.

      Time will tell.

      The only proiblem foods these days are rice cripies (when I put too many in the bowl) and digestive bikkies (when I eat FAR too many lol)

      My next chatting appointment with Dr Banks is in August

       

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    • Posted

      Hi

      I have just had the POEM at the UCLH by Dr Banks just one week ago 27/06/18.

      I could not praise them enough, so professional and caring.

      I have suffered achalasia for six years I am 59 now , had some really bad nights in the past and terrible trouble forcing my food down, I have been on a liquid diet for 10 days now including 3 days before procedure, just had my first soft diet breakfast an omelette probably a little dry for a first meal so did feel it go down, hopefully will slip down easier in the future has anyone had problems after liquid for 10 days , I will be having a barium swallow in a few weeks so will see how it’s going then.

      Dr Banks , Dr Rami Sweis are quality and there full team who treated me.

      ??

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    • Posted

      Great news cheesygrin

      I tried to stay on sloppy foods for a while as there is always some internal scarring after POEM and you Don't want to annoy that.

      The first time real food hits your stomach is an amazing feeling cheesygrincheesygrin

      I found that I was full after hardly eating anything, I think my stomach had shrunk.

      Try not to do too much each day or your body will complain.

      You have earned the right to be lazy for a bit!

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    • Posted

      Thanks so much for replying it’s so reasuring  to read your story as I’m a self employed decorator and need to go back to work soon as possible but don’t want to push it.

      I do notice the difference with the poem already even drinking liquids so fingers crossed.🤞

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    • Posted

      Oh dear me, I'm Really not very good at keeping up with this am I !!

      Hay Ho......

      Here's a pic of my Birthday meal out while I was on holiday in Scotland in August 2018.

      image

      Behind that big bowl of chips is a great big steak with loads of veg, followed by Strawberry Mess and another beer !!!

      Yummy

      It all went down, and stayed down.

      😄

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