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
glad to hear stories have helped you.This is a scary condition but manageable most of the time..
I am 4 years post op now, my swallowing has been good, still need water but eat almost anything.I have annual checkups.
To Greener, its not just those early procedures that left problems. my surgeon nicked something and I was left in chronic pain which affected me greatly but it has eased this year. Still manage a job and three sons.I used to not be able to burp or vomit but this has eased over time too. I often wonder if fundo was tight and this has perhaps eased over time.
This year has been my best so far, it has been a long haul for me, but this is a lifelong condition.
amandakostadinov
Posted
interesting to read your stories! I posted mine a couple of years ago and have only just (March this year) had my Hellers Myotomy...having suffered with Achalasia for over 12 years!...It took years to get a diagnosis and then years on the waiting list!.....After a very bad year and awful weight loss I have finally started to improve after the operation.
It isn't perfect, and I still have bad days when nothing will go down, but it is a massive improvement!
I don't know about anyone else, but I suffered the most horrendous constipation after this op, and I felt that the Drs/nurses didn't explain how bad this could be or take measures to deal with it before I left the hospital. It was one of the worst days of my life! I then suffered terrible diarrhoea for around three months, but as I said, I am slowly improving and weight is slowly starting to go back on!
No-one but Achalasia sufferers will understand just how pleasurable it is to be able to swallow food, feel it go down and then feel full and healthier as a result! Good luck to all of you
osteomyelitisarmboy
Posted
8 weeks of anti-biotics later and infection has gone (thanks to my amazing consultant Mr P D Marshall) who diagnosed it correctly on first glance. Every thing okay now. No pain no swelling no fever. BUT my x-ray isnt clearing. They checked its not a tumour (which it isnt) n said its definitely osteomyelitis. Now Mr Marshall said the reason my x-ray hasnt cleared is its left a slight bit of devitalised bone. Which he very nicely said needs a quick straightforward operation to clean up the site where infection was. He said its straightforward one hour in theatre n ill be fast asleep. Im soo nervous! I know i shouldnt be though!! Ive had heart surgery where i wasnt fully under on made sleepy and it was horrible. And now i keep replaying that operation in my head, even though its NOTHING like what im having done. My heart surgery was 7 hours afterall aswell.
I understand its normal to be nervous. What you have put here though has eased my mind so much
thankyou. I need the op as it will turn septic and kill me if we leave it. So gota wait week and a half. Ill be fine i know it and you have helped to remond me my worries are baseless and completely pointless.
Mike
Ps im 25 yr old slim 6 foot so i know my body can recover fine from this just still worried :-s
manrug
Posted
My achalasia has been getting worse for over 2 years. I was referred to my local hospital at Dartford. After doing the endoscopy and few other tests they could not identify anything and sent me home. I then went private to an international hospital in India. Again the consultants could not find what it was. My situation with regurgitation and chest pains got so bad at one point I thought I was having a heart attack and had to call an ambulance. My GP was useless and again offered to send me to the same consultant I had seen at Dartford. I got so worried and started doing research myself and then a friend of ours had seen Mr Botha at London Bridge Hospital for similar symptoms to myself.
That was the best thing that has happened to me. Mr Botha is so experienced, knowledgeable and re-assuring. He put me through various tests endoscopy and barium test. After these tests he identified achalasia. He has recommended the operation which I am going to have after the monometry test. I will keep this site updated.
Brighlights
Posted
Thank you for posting your story. I found your post very interesting. I haven't been able to swallow food for 18 months and have had to have 5 endoscopies now. They did a Manometry study and found that there was a problem but don't know what the cause is. Yesterday I had another Endoscopy to have Botox injections in the oesophagus. I was able to eat a Bacon Roll on the train back home without having to wash it down as has been the case for the last 18 months. If it is successful then my Consultant will do a Myotomy op as the Botox is only short-term remedy and lasts about 6 months. After reading your post I feel happy to have the operation.
Reagrds
peter21455 Guest
Posted
Anyone had symptoms getting worse. Anything anyone does? i coax the esophagus open with warm coffee before eating. Also drinking aloe vera juice to soothe it...
Any other suggestions welcome.
paddie46788 Guest
Posted