Achalasia, my story
Posted , 11 users are following.
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
ellis_emmerson
Posted
sorry again if i misunderstood.
Guest
Posted
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
ellis_emmerson
Posted
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
ellis_emmerson
Posted
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.
Guest
Posted
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:
ellis_emmerson
Posted
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.
Guest
Posted
Thanks again for all the info and support :-)x
ellis_emmerson
Posted
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.
Guest
Posted
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
ellis_emmerson
Posted
r u blending/liquidising your food, or are fluids hard to go down.
Guest
Posted
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:
ellis_emmerson
Posted
r u on facebook group
sue
Guest
Posted
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. :-(
Greener
Posted
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
joanna17
Posted