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....

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  • Posted

    Thank you so much for this information...

    Amanda

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  • Posted

    Update on report from above.

    In the following three weeks up to my appointment with my surgeon, my appetite gradually returned and I found that I could eat larger portions. I was able to take things steady at work and did not do anything too physical. I had stuck rigidly to the diet and had resisted the temptation to eat a nice juicy steak!!

    There were odd ‘pains’ in my tummy region, but nothing that you would call painful. The one thing that I could feel was tenderness particularly in an area below my left rib cage. It was not easy to determine whether the feelings were from the external stitched points or internally from the operation. All the stitched points have healed very well.

    When I returned to my surgeon on 5th March, he was pleased with my progress and said all appeared to be in order. He said I could now eat just about normally, but to still avoid fizzy drinks and bread and try to eat tender meat, not gristly tough meat, he had known people have a problem with this in the past.

    I still have to take the Omeprozole capsules (10mg) to reduce stomach acid, which could cause a problem coming back into the oesophagus and will have to take these for the rest of my life.

    I was also able to resume physical activity and have started to play tennis again with no ill effects.

    It was a great relief to be able to eat almost normally again particularly roast beef and everything has gone down well. In the past three weeks since seeing the surgeon there is still tenderness beneath the left rib cage, not really sure where this is coming from. I also get odd twinges when I have eaten quite a lot and have a fuller stomach or bladder, possibly due to increased pressure on the tender areas.

    When discussing the operation with my surgeon, he said that the most important thing to bear in mind when having the operation is the competence / experience of the surgeon. If the operation is carried out perfectly, there is no reason why the benefits of the procedure shouldn’t last for the rest of your life, without any ill effects. Obviously the oesophagus will never improve from it’s current state and it is only in very extreme cases that it will deteriorate to such an extent that it will prevent you from swallowing your food.

    I am so glad that I have had the operation and feel so much better without the worry of what effect eating my meals will have. Also being able to sleep at night without waking up ‘choking’ with regurgitated food. I do try to drink plenty of squash or water with my food.

    I have one further appointment with the surgeon early in May just to check that all is in order.

    I hope this little story has been of benefit to some of you, as I have said before, don’t be worried by the operation, if you have been diagnosed with achalesia, it should improve your life considerably.

    Good luck and good health……

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  • Posted

    My 8 year old son has suffered with achalasia and like you had the operation this year - on 2nd February. It has been interesting reading your account. The similiarities in the recovery process are many and some of your comments regarding the type of food to eat in the first 6 weeks after the operation have proved particularly helpful. Likewise, my son could only eat small portions initially and is now gradually building up the amount which he can eat - he is just about back to normal. He too experiences pain at times - if he has eaten too much or is feeling anxious - but as time passes the pains are slowly reducing. He is now able to participate in all sports and at long last life is returning to normal!

    Thank you for your comments - they have proved really useful. Wishing you all the best.

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  • Posted

    Thank you so much for this posting! It's really put my mind at rest as I am attending the hospital to see consultant next week and think he/she will suggest having the operation!..thank you so much! Let us know how you progress. Best wishes
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  • Posted

    Thank you so much for your sharing your experience. It has put my mind at rest. I have an appointment with a surgeon tomorrow and will be having keyhole surgery. I have been feeling so wretched and now, after reading your posting, feel there is light at the end of the tunnel.
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  • Posted

    I've had achalasia dor about 8 months now, and after much frustration waiting for appointments etc in the NHS, have been reccommended for surgery by my consultant. I meet the surgeon on August 20th and will see if he agrees to operate and how long the waiting list is. My concern about the operation is the continuation of reflux after. I've heard that this is one symptom which may not go away, and it is one that I am really sick of, in every sense of the word! At the moment, I continually 'spit up' food and drink, and carry plastic cups about with me to avoid the embarrissment of spitting in the street! I would love to know if you have experienced reflux, if it was a part of your symptoms before, or if it has occurred since the op. :?:
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  • Posted

    Im going into hospital in three weeks time for this operation and your account has helped allaysome of my fears.I started to have symptoms following the birth of my third child, two years ago.I have swallowing difficulties and have no motility at all in my oesophagus.I also get terrible reflux, despite tests saying otherwise. It is really this I am concerned about as they say it can be worse.The surgeon is carrying out a fundoplication at the same time so hopefully this will help. Im glad I found this site and will go ahead.
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  • Posted

    I forgot to ask. did you research your consultant before the op. Mine appears to know what he is doing but it is not a specialist centre and I dont know whether I should get a second opinion
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  • Posted

    Just wanted to thank Robin for the detailed description of the operation. I had my operation on Wednesday 10th September at 9.30 am and was out of hospital the next day at 6pm!

    All went extremely well, my five wounds were covered with dressings which I removed myself on the Sunday. My stitches were disolvable so no need to have them checked by my Gp. I cannot tell you how great I feel. I was so nervous about the whole thing and was not convinced that it would really solve things ( my achalasia started in November 2006) but I can now drink things normally and so far have had NO problems with anything I have attempted to eat! I have no acid reflux and apart from feeling rather sore...I eally feel 'normal' again! lets hope it lasts!

    All the best to fellow sufferers...the operation is WORTH IT !

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  • Posted

    I would just like to thank Robin and others who have posted. I have been suffering from this condition since October 07 though most likely have had it all my life with it only becoming noticable since that date.

    I have been through all the tests and now go for my hellers Op on the 18th of Nov. Robin thank you for the description of your experience as it has eased my mind so much.

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  • Posted

    I had the Nissens Fundoplication done on 14 October 2008 and unlike all you lucky people,have suffered ever since.I was very good on my eating post op,stuck to 'mushy/liquid' foods for a while and then gradually eased myself back to more substantial foods.I am now 18 weeks post op and regretting every minute.I still cannot swallow things properly,all manner of foods/drink 'stick' on their way down oesophagus,and because of trapped air i cannot belch yet,very painful and very frustrating. :evil:

    I saw the registrar last week to update and it has been agreed that i am to have the OGD with balloon dilatation.I am however very worried at this as it carries many more risks than the Nissens.I cannot go on any longer as i am,so this procedure is the next step.I wish i had had an experienced surgeon in this field for the NISSENS but i am guaranteed that my consultant WILL be doing the dilatation to 'stretch' the tightness of the wrap,so fingers crossed.I am down as urgent so hopefully it will be marked as that.Is there anyone out there that has had the OGD(oesophagealgastroduodenoscopy) and balloon procedure??? Please,if there is.....i would appreciate views/feedback.Ta muchly!! :lol:

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  • Posted

    You poor thing. I have never heard of the Nissens procedure. Is it the same as the Hellors myotomy?

    I hope all goes well x

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  • Posted

    Hi

    R u sure u had the nissen fundoplication. they usually do the dor fundoplication for achalasia.mite be why you are having problems.as far as i understand the nissen wraps all way round and is a lot tighter.the dor is a partial wrap theres an article dor versus nissen .i think its on achalasia site. iF consultant going to do balloon it mite ease things.might be worth you checking out different fundos and ask him why he done that one for you. Im so sorry to hear you are struggling.im 5 months post op. my swallowing better but have had unexplained continuous pain and have been off work 4 months, so no it doesnt always go to plan.hope consultant will sort it for you.

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  • Posted

    Hi Ellis.Yes i DEFINITELY had the Nissens fundoplication,not the DOR or even Hellers Myotomy.It was a full wrap and basically it HAS been done too tight,i know that-it came straight from the horses mouth so to speak.

    I am now going in for the procedure on April 28th and am really really worried about having it done to tell you the truth,but i have no choice.

    I do not fare well with general anaesthetics and especially not for 60 mins.

    I do have EVERY faith in the surgeon/consultant who is doing the op,he is one of the best(shame he did not do the Nissens!)

    I have also got to go for an appt to see him BEFORE the OGD etc etc (day before op!!) Wondering why that is necessary?? :huh:

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  • Posted

    Hi the sphincter muscle is the problem in achalasia. so what i understand the surgeon has done the fundo but not touched the sphincter. therefore the prob is still there. The balloon dilatation could have been done without the fundo.

    wot i understand is that the fundo is done as a consequence of widening the sphincter to let food thru. the fundo is to stop the acid coming back up.a side effect of having a widened sphincter. They dont do the nissen because that would then make thje opening too tight,as you are finding.

    If he is going to do the balloon on your sphincter muscle then you will still have the tight fundo.

    Is this as clear as mud.

    Apologies if i have understood your op wrong. but ask lots of questions b4 he goes ahead.

    I think im too late for this advice, are you now recovering and how are you

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