Achalasia, my story

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I have recently had my operation to 'cure' my achalasia and have found this website whilst trying to find if I am having the same experiences as others with this 'disease'. Although everybody is different, I thought I would post my experiences in the hope that somebody may benefit from them.

It was only recently that I discovered that this condition only affects 1 in 100,000. I had suffered the usual symptoms described by others and after the having the barium swallow and manometry, it was confirmed that I had achalasia and was told the only 'cure' was to have the Hellers Myotomy along with the Fundoplication (wrap). I did not have the option of the balloon dilatation, but am very happy that I was only given this option. My surgeon pointed out that I had to have the operation, since in time, the condition wuld eventually kill me and to those who have the condition, it is easy to imagine the downhill path as the symptoms get worse.

I am in the fortunate position where I was being treated privately and could go into BUPA for the operation a few weeks later. I had the operation on 22nd Jan 2008. I was of course feeling nervous, having never had a general anesthetic, but tried to keep positive, since I knew that it was going to do me good.

The operation was to be performed on the Tuesday evening, so I arrived late afternoon and after the usual prelims, blood pressure check, chat with surgeon, anesthetist etc. was taken off to theatre at 5.30. There really is nothing to worry about. The administration of the anesthetic was so calm and after a woozy feeling for a few seconds, the next thing I knew it was three hours later and I awoke in the recovery area. I did have a tube going through my nose into my stomach, which was to do with the air that had been pumped in to assist the operation. (Similar to that when I had the Manometry) and a 'drip' fed into my hand, but this was all put in place while I was 'asleep'. I was wheeled back to my room and dosed on and off most of the night. The nurses came in regularly to take blood pressure readings and check on me and all was well. The tube did cause slight discomfort, but was ok. The sugeon returned at 6.30 am and since I felt ok, he was able to take the tube from my nose, which was a great relief. I had a small sip of water, very pleasant.

I was told that on the Wednesday, I could only drink, just water, cups of tea or coffee. I actually felt quite well considering the op was only 12 hours before. I had to have an injection at 7 am, an anti sickness drug. (Suggest this is done into your bum, not thigh, it was less painful!!) I also had pain killing injections twice a day into my stomach, not as bad as it sounds!! The sickness drug was given three times a day until I left hospital, the painkiller only for a couple of days. I was also given other oral pain killers which no doubt helped.

On the Wednesday, I was able to get out of bed and move around, sitting in my chair and was able to walk along the corridor. There were five plasters covering the five small holes around my belly area. One had three stitches, one had two and the other three, one only. I could not say that I was in great pain, more a sort of mild ache. Obviously, you did not want to move too rapidly, in fact the worst thing was trying to supress any coughing, which was quite painful, probably pulling on the stitches more than anything else. This was a problem for up to a week afterwards. Also pulling yourself up when lying in bed was awkward, so as not to pull on the stitches.

I was able to have a wee that morning, to the delight of the nurses for this is a good sign!! I slept well that night and was woken for the 7 am injection. No regular night visits this time, think bp only done once in the night. In the morning my plasters were changed to waterproof ones and all wounds looked ok, the drip was removed from my hand and I was thus able to have a shower. I was told that I could have some sloppy food. I was quite nervous at the prospect of eating again. So a small amount of soup and scrambled egg was eaten for lunch. It was a great relief to feel the food going down and not getting stuck. All went well and stayed down, so it was a small amount of shepherd's pie for tea and jelly.

Mobility was improving and I was able to go for regular walks around the hospital. I was pleased to be told that it was the intention to keep me in for the Friday and probably let me home Saturday morning. I did not feel ready to go home on the Friday, another day of rest and getting used to eating would be very beneficial. I had porridge for breakfast, soup and omelette for lunch and sheps pie and jelly for tea. All felt really good and a great relief. During Friday, I was reducing the pain killers to just taking paracetamol evry four hours. The pain was now greatly reduced.

The surgeon finally gave me the all clear to go home on the Saturday morning. Told me to keep up the sloppy diet, minced beef rather than roast beef for the next six weeks until he sees me again on 8th March. At this stage, I had not been able to have a 'pooh' properly, but the surgeon was not too concerned about this. I had been burping quite a bit, which was natural, although I was told that most people would have wind, but this did not happen to me. It was actually Sunday before I had a decent pooh for the first time, so don't be worried if it does not happen until then. All things in that department have been fine ever since. If I had to be honest, I don't think my bladder is able to hold as much as before, had to get up in the night early days to wee, which is not normal for me. This could be due to incresed stomach size pressing on bladder, don't know. Although this 'problem' is now getting much better and getting back to normal.

I had the stitches remove the following Thursday at my local surgery and all looks very tidy and healing well. There has been a swelling around the largest 'hole' but this is normal apparently.

I have been fairly mobile since comimg home, the pain and your healing should be thought of week by week, rather than on a daily basis. I drove my car after two weeks, just a few local journeys. I have an automatic, which is a great help, the problem is twisting round to look behind, this can be painful, so driving is not perfect. Today, Friday 15th, three and a half weeks later, there is still a slight swelling and slight soreness. Still a case of taking it easy and not putting undue strain on the stomach.

I have been eating soft food, weetabix, porridge, shepherds pies, fish, rice, mashed potatoes, cakes and chocolate etc. Little and often appears to be best. It is a great feeling to have food stay down and not waking up at night 'choking'.

From my experience so far, this operation has been wonderful and it appears to be making life so much better. The pain that I had post op was fairly mild and well worth it for the improvements I am benefitting from now. I hope others are finding the same.

I am going back to work on Monday, although do not have too physical a job, will still need to take it easy.

I hope I have not bored you and gone into too much detail, but hope that some of the detail will be of benefit to some fellow suffers.

I will try and give a final update after my appointment with the surgeon in three weeks time.

Good Luck....

5 likes, 37 replies

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  • Posted

    Hi ive read over what you said, do you have achalasia or just reflux, my colleague had reflux and had the nissens, She also had similar symptoms to you post op, but shes four months down the line, and her main problem is abdominal wind and bloating.(She doesnt have achalasia.)but reflux improved greatly.

    sorry again if i misunderstood.

  • Posted

    Hi Ellis.I am not having the OGD and balloon dilatation til APRIL 28TH.I have got to go and see the consultant ONE day before the op too...god knows why??As if i have not got enough to worry about.I am scared about this op.It will be under general anaesthetic and for 60 mins too!!

    I DID have the Nissens Fundo done,it is just that (so i have been told??) that the fundo wrap was done too tight.I do not get any reflux now thank god,just horrendous problems with swallowing and a severe inability to belch....really not funny.

    I am going to have to ask loads of questions when i see him day before op and just hope i get answers,thats all.This has to be it....no more surgery,should not have messed it up in the first place.Anyone having a Nissens done......please get a reputable surgeon to do it with loads of experience...so you do not have to go through what im gonig through 5 months later!!! :x

  • Posted

    Hi my colleague had same symptoms as you with nissen but swallowing much better,just abdo discomfort now.we had ops around same time,she doesnt have achalasia, just reflux.(well not just).We laughed cause they relaxed my sphincter to allow me to swallow (achalasia)and tightened her opening(reflux), so my swallowing was improved with my THREE HOUR OPERATION.and hers was as mine had been b4 the op. But we were both post op buddies together.lol.

    I think you have just been unlucky cause guessing how tight to wrap the fundo must be difficult for the surgeon.There must be a fine line to stop the acid coming back, it seems to have worked in that sense for you though.

    Its awful when you have an op and the original symptom is helped but you are left with a different complaint.

    Ill have to ask my colleague if they are thinking of easing her abdo discomfort, like you

  • Posted

    p.s. the consultant usually likes to see you the day before to make sure there has been no changes in your condition.

    If you dont have achalasia, you have had the right fundo (NIssen)for reflux.

    I was a bit confused u being on an achalasia site, but its good that you are here .its just ops are different for achalasia and reflux.

  • Posted

    Hi Ellis,thanks for your further comments,very interesting.

    I have now learnt that my pre operative assessment on Tuesday(14th) has been cancelled as consultant wants to see me in outpatients first??

    So all systems go for that appt but quite upset my pre op tests have to take a back seat....i am sooooooo worried that he will try and CANCEL the operation for my swallowing difficulties,remedied by balloon dilatation(i hope??) I see my consultant on the 27th April and HOPEFULLY have the operation as planned on 28th.Do you really think it is necessary for this appt on the 27th.....am i worrying over nothing?? Sorry,but i guess there are many risks associated with the dilatation bit.It had all been agreed to do this op by the reg and the consultant,now this ?????? Am i worrying over nothing....what do you think.WHY OH WHY HAVE I GOT TO SEE HIM BEFORE HE OPERATES,ESPECIALLY ONE DAY PRE OP?? Please help,any advice greatly appreciated!! Ta :wah:

  • Posted

    HI pre op assessment, which is usually form filling and blood pressure ,urine tests , etc can be done by nurse at opa on 27th, so dont worry too much, he wont do op without reviewing your health, even if its on day of op. like i said earlier to see if their is any change in your condition.it is a good idea to go then you can ask any questions you may have. He may be in theatre day of op so you may ,if at all ,see him only briefly b4 op.

    any op is awful but hopefully it will ease your symptoms.

    you could always ring consultants secreatry, ask y it was cancelled, they dont mind,phone number will be on letter.it may ease your mind.

  • Posted

    I know about pre op assessments,as i have had them before eg;blood tests,urine sample and MRSA swabs etc etc.I am just so worried they will cancel the op and i basically need it,swallowing is such an issue,cannot belch to save my life and wretched upper back/shoulder pains.Nightmare.These will NOT dissappear in two weeks so at least i can go with all the symptoms and hit him hard with it.Going thru hell and back.You have been really supportive Ellis,thank you!! I do have a very obstinate surgeon and have been told that he IS doing the procedure as it carries a few risks(like any op)but more so.I have asked to see him on clinic day(27th) and will ask many questions,including-is he in theatre next day.No surgeon,no op.Not being messed about anymore :-(

    Thanks again for all the info and support :-)x

  • Posted

    Hi Its awful that we have to wait for something that we need, oh if only we could go private and hav iit done tomorrow.

    I think docs should come and live with us for a day and c our suffering.weve all been there waiting and two weeks seems an age.

    itll come round soon,

    i wouldnt have had any one but consultant do op.

    keep us posted.

  • Posted

    Hey,if only.I know its only two weeks tomorrow,but when u are suffering,it seems like a lifetime away. :-( I really need this operation and its just a case of convincing the surgeon/consultant.They do not see the nightmares i have eating,drinking etc etc,but they will soon thats for sure.

    Fingers crossed op is not cancelled too,mind you,they cannot do that without my permission i don't think??

    Will be in touch soon x x

  • Posted

    Hi have u tried peppermint of any sorts, peppermint tea is good for trapped wind .i remember having shoulder pain from wind post op and it helped, several cups a day or sweets.

    r u blending/liquidising your food, or are fluids hard to go down.

  • Posted

    sad I find fluids hard to go down,i always get a 'gurgling' noise,which in turn is really embarrassing,coming from my throat/oesophagus.I guess this is just trapped air that cannot come up as i cannot burp yet,NOW 6 months post the fundo op.I just take it for granted now,fact of life.

    I only have one more week to go and hopefully it will be sorted once and for all.S'been a long time coming....dont really think that the surgeon wants to do the OGD/Balloon dilatation as it carries many risks,especially the perforation/bleeding bit PLUS I am going to get the acid eflux back.

    Back to square one...NOT IMPRESSED.Will hav eto wait and see. :cry:

  • Posted

    Hi angry female,,sory dont know your name..wot happened at opa..i havent been on for a while...

    r u on facebook group

    sue

  • Posted

    Hi.Yes had OGD/balloon dilatation done....never again!!!

    Was awake all the way through,sedation was rubbish....AWFUL experience!!

    Am on Facebook yes,name is Heidi.

    PS;Has not made any difference,swallowing still bad,see consultant in 5 weeks to discuss next option.....probably surgery. :-(

  • Posted

    I'm so glad to see so many positive results about this operation however I do largely feel that many people are getting the benafits from other (guinea pigs) that were used at an earlier stage one of which I'm sorry to say is myself who had a nissen fundoplication 100% wrap in 1999 which in a way was successful however has now given me something called gas bloat syndrome!! This means that although I can now swallow solid foods easier (although not all the time) I have been left with a condition meaning I'm not able to vomit or belch even if I get a stomach bug or food poisoning. I'm also told by my surgeons that due to the operation I had in 1999 I'm not able to have a partial Wrap procedure due to scar tissue etc. This therefore means that approximately once a month I have to inject myself with an anti sickness drug and take the following day or two off work due to build up of gas/swallowed air which is a normal occurance following the nissen procedure. As far as i'm aware I'm one of very few people that have had this procedure carried out and have life changing side effects that may well never leave me!!!!!! Anyone that has been told they are to have a nissen procedure carried out I would strongly advise to think twice!!!!!! All I can hope is that my daughter never suffers from this condition however I hold little hope due to the fact that my Grandmother and my father are also sufferers although I'm told this condition is not genetic or hereditory which to this day I still strongly question... Hope you all feel better at the expense of myself and other past sufferers..

    All the best to all of you and hope this information is informative although sounding a little negative..

    Am on facebook Nick Green Bristol Uk

  • Posted

    Hi, I read your story before my surgery on 20/8/12 and it really reassured me. I have had achalasia since 6/11 it came on suddenly after a car accident and got progressively worse - I was unable to even swallow my own saliva and lost 3 !/2 stone in this time. I researched and found Mr A Botha at Guy's and St Thomas's London specialised in Heller's op. I was on his list for 5 months before I had surgery. Two weeks later I am on soft diet, can swallow and drink with no problems and have not regurgitated at all, it was uncomfortable after surgery but not unbearable. I feel like I have my life back and apart from some acceptable chest pain, it feels like a miracle has happened and would urge anyone debating surgery to have it.

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