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My Life with Achalasia

A little bit about me – I am a 38 year old married male with 2 young children living in a little place called Northern Ireland. I have up until now lead an active lifestyle playing Rugby for most of my adult life but now eventually hung the boots up so my fitness is going and I am putting on a bit of weight. (still not in bad shape though ha)

Looking back I can only ever remember that whatever I had to eat seemed to stick in my throat but up until October 2007 I actually thought that this was normal and how everybody felt when they ate. However if I had a good drink with my meals they seemed to go down ok and I had no real problems. (Occasionally I did suffer from bad bouts of painful heartburn/indigestion but that was about it and other than that I seemed to be in general good health)

Then in October 2007 my life started to change forever. I started to notice that all food/liquids were sticking after I had consumed them. So much so that I would take on the appearance of a character from a sci-fi movie in that I felt my eyes water and bulge out of my head and I would contort and move about just to get the food down and get a bit of relief. However you do have to eat so this would happen quite a few times daily. At this time I started to get recurrent and painful heart burn. I went to my local GP and explained my symptoms and I was told the heartburn may have inflamed my oesophagus casing a slight stricture hence my difficulty in swallowing. I was prescribed a course of Lansoprasol.

I started the medication and my heartburn disappeared but the problem in swallowing continued, so in Late November I returned to the GP and was told to double up my dose of Lansoprasol.

CONDITION UPDATE: - In December 2007 my condition got worse. I now found myself not only struggling with eating every meal but I started to wake numerous times in bed during the night with coughing fits. During the coughing I would bring up food particles into my mouth. The coughing got so bad that I had to move out of the bed I shared with my wife and into the spare room so at least she could get some sleep.

In January 2008 I again returned to my GP and explained the latest conditions and I asked him if I could be referred to a specialist. Luckily for me I have private Health care so my GP gave me the name of a Consultant and a letter of introduction.

I got an appointment with a Specialist in February 2008 and explained my symptoms and felt that something extremely sinister was happening in my body with visions of cancer becoming more evident. This was because I had tried to self diagnose myself on the internet typing in ‘difficulty when swallowing’ and everything seemed to indicate I had cancer. The Specialist tried to dispel any fears of cancer and he said the best route would be a series of tests starting with an endoscope examination of my esophagus.

CONDITION UPDATE: - By now I found that if I coughed hard enough my mouth would fill with ‘Gloop’ – this is my self made medical term for what I can only describe as a thick sticky substance made from my own body’s saliva and mucus taking the appearance of a clear gunge. On occasions I found myself in public and taking a coughing fit resulting in the gloop making an appearance - now on a good day with not to many people around I could just spit it out discretely but on a bad day when people were about I had to swallow it again. ‘Gloop’ also started to make regular visits when I was in bed trying to sleep.

In March 2008 I got a date for my endoscope examination. I arrived at the clinic and was brought to a theatre room where I met with my Consultant. He explained the examination procedure and I was asked if I wanted a full general anaesthetic or a local throat anaesthetic. I choose the local so was fully awake during the procedure (an option I would still choose). The anaesthetic tasted of rotten bananas a taste I actually liked reminding me of a strong shot of spirits you would get on a night out. A few minutes later and my throat went numb making swallowing even worse but not in a way you can’t handle. The endoscope was inserted into my throat and I felt it move down my oesophagus and into my stomach. There was actually no pain involved in the procedure just a slight uncomfortable feeling when the endoscope pushes air into the cavities so the consultant can see about. 2 minutes later it was all over and I looked at the Consultant with worry asking him did I have cancer. He told me he could see no evidence of cancer but that my oesophagus was grossly dilated with a large amount of food debris indicating I might have a problem with my lower oesophageal sphincter muscle. He said he had a good idea of what my problem was but further tests would be needed to confirm his suspicions.

At this point and based on what I was told I again checked the internet and this is when I first became aware of the condition ‘Achalasia’.

I got my further test date early August 2008 and this was for an oesophageal manometry and 24 hour PH level test. The entire procedure was conducted by a trained nurse who I must say was very good at explaining the procedure and again a local anaesthetic (the rotten banana one) was used this time it was sprayed into the back of my nose. (Be prepared it is as if someone just punched you on the nose). Again any pain only lasts seconds so it is not something you can’t handle. The procedure involved a thin wire being fed through the nose down the oesophagus into the top of the stomach. It is done to measure the muscle strength of the oesophagus when you swallow. My results were bad showing no muscle strength at all and my lower sphincter was so tight the nurse couldn’t manage to get the mamometry wire passed it. She off the record informed me it looked as if I had ‘Achalasia’

CONDITION UPDATE: - Since my endoscope procedure until the date of the manometry test my condition had got a lot worse. I could feel any food now that I ate sticking in the oesophagus queueing up and not passing into the stomach at all. As well as the ‘gloop’ appearances I now found my entire meals coming up I had lost over 20lbs in weight (all without any form of training). I was getting little or no sleep at all so was walking around like a zombie most days feeling terrible and dreading meal times. Because of the constant tiredness you become lethargic and everything seems to be a chore so depression starts to kick in and you automatically enter the why me feeling sorry for yourself mood.

In mid September 2008 my Consultant received my tests results and I met with him for my official diagnosis so I now had ‘Achalasia’. The Consultant was a specialist in Laparoscopic Surgery and he told me although my condition will never be cured it can be treated to greatly improve my lifestyle by Hellers Myotomy with Fundoplication and it would be his advice to go straight to surgery. To be really honest if the consultant had said he could do the op immediately I would have got up on his office table there and then but a date for the 18th of November 2008 was made.

CONDITION UPDATE: - from the last consultation up until my Operation date my condition deteriorated drastically losing now I had lost 28 Lbs in weight. I actually after every meal would go to the toilet and make myself cough dislodging any food in my oesophagus which on looking at it was a cross between Achalasia and bulimia.

OPERATION: - I was admitted to the Hospital the day before my surgery where I was spoken to by the anaesthetist and he briefed me about the entire procedure. Samples of my blood were taken for testing etc and I was settled down with some medication to try and calm my nerves. I did try to sleep but must admit this was a very difficult thing to do. My Operation was scheduled for 11:00 am on the 18th so not only was I in the Hospital overnight but I had most of the morning to wait as well. This time was hard and a lot goes through the mind I guess fear of the unknown as I had no form of surgical procedure in my life up until this point.

09:00am: - I was given medication again to settle my nerves

11:00am: -Nobody has came to collect me getting worried

11:20am: -They came in through the door and started to wheel my bed out of the room. Something inside me actually said “get of the bed and run” but I couldn’t move (It wouldn’t have been a pretty sight anyway as my backside was hanging out of the gown they had given me to wear). I looked at the theatre staff in full theatre uniform pushing the trolley this time not through bulging eyes but eye’s the size of dinner plates. I tried to make small talk as I’m pushed along the corridor towards the lifts. The Staff can see my panic and try to make small talk back to me. Then out of the lift and straight into the Operating room.

Once in through the door I see the anaesthetist who spoke with me the night before. He has a really calming influence and then behind him I see my Consultant who stops what he is doing and comes over with a smile. He chats about what is going to happen whilst the anaesthetist puts a line into my arm. No pain so far just nerves. The anaesthetist then starts talking and I say to him I suppose I will wake up later and the operation will be over he tells me yes I will know nothing about the operation at all. It seems surreal but I was probably chatting away for a good 10 minutes up to that point but this is all I remember. The anaesthetist then said you will start to feel a bit wosey in a second or two and I felt a really nice warm rushing feeling travelling up my arm and then my lights went out.

1:30pm: - I wake up confused in the Recovery ward and immediately feel a searing indigestion like pain. The staff immediately noticed my distress and within 10 seconds my pain has gone as they have given me pain relief. I then sleep mostly until 5:30 pm in the recovery ward until I am taken back up into my room again.

5:35pm: - I come round a bit when I am back in my own room and on waking I must admit I was not in any real pain just what I would describe as a mild discomfort. I looked at my stomach area which had 5 small and very neat stab wounds held together by a total of 12 staples. I probably smiled at this point because the operation was over and I had come out the other side without a great deal of pain. Due to the anaesthetic I drifted in and out of sleep for the remainder of that day and woke early the next. The Nursing Staff did constantly check on my progress throughout this time and I was given paracetamol and Voltorol for pain relief. I was also put on an entire food and liquid fast for a period of 24 hours.

The day after Surgery: - I woke early again with discomfort not pain and was able to get out of bed and get up on my feet. I went to the bathroom and washed myself then back into bed. My Consultant and Anaesthetist both came to see me at separate times and they informed me of their findings during the operation. I was told that on endoscope examination they found a huge amount of old and decaying food around the lower muscle that was starting to adhere to my oesophagus wall. So not only was my lower muscle tight and nearly closed but the food was causing an obstruction as well. They removed the food and cleaned the area. The Hellers Myotomy and fundoplication went exactly as the Consultant planned and overall they were extremely pleased with how it all went.

At 1:30pm that day I was allowed lunch (30ml of water) and I drank it all down and couldn’t believe it when I felt the cold of the water passing the lower muscle and into my stomach. On the hour up until 5:00pm I was allowed 30ml of water and then this increased to 60ml up until 9:00pm when I was allowed an unrestricted amount of liquid.

I then had a full glass of water followed by several cups of tea and all flowed into the stomach without any problems.

The next morning I was allowed a bowl of Rice Crispi’s to eat for breakfast followed at lunch with scrambled egg and an omelette for dinner. All the food passed with only a sip of water. I cannot express this feeling of being able to eat again it is like I have been given a second chance at life.

All in all I spent a total of 4 days in Hospital and have walked out the door a new man. I was even able to walk to nearby shops on my own and buy chocolates for the nursing staff and when my wife collected me we went shopping and I had a cup of coffee whilst out. Again I was in discomfort but absolutely no pain when walking about.

So now the aftermath.

It has only been 6 days since my operation and my Consultant has even told me to start food experimentation and I have had Toast and ham sandwiches (wow bread that I haven’t had for about 5 or 6 months) but I have mostly been very good taking sloppy foods but everything so far has sailed down into my stomach. I do however think mentally that this is too good to be true and I am waiting for the old feeling to come back again but I am just thankful for what I have now and will just live for the moment. I haven’t coughed at night at all and have had full sleep which is another wonderful feeling.

I am not so stupid as to think that I have been cured as we all know there is no cure for achalasia but what I can say is that I have been helped to a degree that will change my life completely. I don’t know how long this will last for and I am aware it can come back again but on the other hand it might well just last me a lifetime. I am also all too aware that my swallowing will never be that of a normal person but please let me tell you that at the minute it’s not too far of it and being honest it is the best I have swallowed in my entire life.

I cannot stress enough to anyone out there who has this condition and who is frightened, depressed, and suffering that whilst there is no cure there is excellent treatment available to help elevate the symptoms so that you can get back to a normal life. My Consultant informed me that the best treatment for me and my particular case was the Laparoscopic Surgery and I can say so far it is turning my life around completely. I can promise you if you are trying to make your mind up about this form of treatment that there is little pain involved more discomfort than anything else and it is probably less discomfort that you are feeling without being treated.

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  • Posted

    Thank you for taking the time to make such a comprehensive post - hope you have happy swallowing!!

    Regards

    Tim

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  • Posted

    Thank you for sharing what happened. It has given me a good idea to what I will expect in January when I have my op. thanks
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  • Posted

    Thanks Ray - your story is much appreciated by us all

    I am going exactly the same as you mate - had a course of botox injections 3 weeks ago and it has not helped - back to see consultant on 15 Dec 2008,

    I reckon I have now lost over 2 stone since September 2008 - Consultant told me that I would lose weight but is this a normal loss ??? how many pounds did everyone else lose???

    Consultant told me prior to botox injections that he would probably do a diluatation if botox did not work thereaher it would have to be a operation. it looking like a operation now as hardly eating and cannot keep anything down at every meal

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  • Posted

    Kaybee,

    Hang in there. you are going through probably the worst period. if you can push for the operation i promise it is such a difference will little or no pain.

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  • Posted

    Hi Ray I hope you are still doing well.

    I am eleven weeks post op now (same operation). There are complications to this op. My stomach lining was perforated, which has caused a much longer recovery period and im still in a lot of stomach discomfort, needing analgesia four hourly. I was able to eat toast and a sandwich for the first time this week, my swallowing is almost back to normal. I have no other symptoms.

    This op has been the answer for me and I would go through it all again. Just not all are as straightforward.

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  • Posted

    UPDATE

    I started to have feverish flu like symptoms on the 2/12/08 and was admitted into Hospital for observation as they thought i had either a perforation, a clot on the lung, or a viral infection brought on by the surgery. Luckily for me it was the last conclusion and i was treated by way of anti biotics that is slowing helping me out of the infection. I stayed in hospital until the 4/12/08. It came about when i started to have a stabbing pain under my rib cage on the right hand side when i breathed in and out so it was thought my right lung might have been infected. The pain was accompanied by a very severe flu like condition with my entire body aching. thankfully after going on I/V anti biotics the flu like condition has lessened and i am starting to feel alot better. I can still also eat well which is a big plus.

    Everyone please hang on in there and good luck with dealing with Achalasia.

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  • Posted

    [quote:03590080e0=\"RayBelfast\"]My Life with Achalasia

    A little bit about me – I am a 38 year old married male with 2 young children living in a little place called Northern Ireland. I have up until now lead an active lifestyle playing Rugby for most of my adult life but now eventually hung the boots up so my fitness is going and I am putting on a bit of weight. (still not in bad shape though ha)

    Looking back I can only ever remember that whatever I had to eat seemed to stick in my throat but up until October 2007 I actually thought that this was normal and how everybody felt when they ate. However if I had a good drink with my meals they seemed to go down ok and I had no real problems. (Occasionally I did suffer from bad bouts of painful heartburn/indigestion but that was about it and other than that I seemed to be in general good health)

    Then in October 2007 my life started to change forever. I started to notice that all food/liquids were sticking after I had consumed them. So much so that I would take on the appearance of a character from a sci-fi movie in that I felt my eyes water and bulge out of my head and I would contort and move about just to get the food down and get a bit of relief. However you do have to eat so this would happen quite a few times daily. At this time I started to get recurrent and painful heart burn. I went to my local GP and explained my symptoms and I was told the heartburn may have inflamed my oesophagus casing a slight stricture hence my difficulty in swallowing. I was prescribed a course of Lansoprasol.

    I started the medication and my heartburn disappeared but the problem in swallowing continued, so in Late November I returned to the GP and was told to double up my dose of Lansoprasol.

    CONDITION UPDATE: - In December 2007 my condition got worse. I now found myself not only struggling with eating every meal but I started to wake numerous times in bed during the night with coughing fits. During the coughing I would bring up food particles into my mouth. The coughing got so bad that I had to move out of the bed I shared with my wife and into the spare room so at least she could get some sleep.

    In January 2008 I again returned to my GP and explained the latest conditions and I asked him if I could be referred to a specialist. Luckily for me I have private Health care so my GP gave me the name of a Consultant and a letter of introduction.

    I got an appointment with a Specialist in February 2008 and explained my symptoms and felt that something extremely sinister was happening in my body with visions of cancer becoming more evident. This was because I had tried to self diagnose myself on the internet typing in ‘difficulty when swallowing’ and everything seemed to indicate I had cancer. The Specialist tried to dispel any fears of cancer and he said the best route would be a series of tests starting with an endoscope examination of my esophagus.

    CONDITION UPDATE: - By now I found that if I coughed hard enough my mouth would fill with ‘Gloop’ – this is my self made medical term for what I can only describe as a thick sticky substance made from my own body’s saliva and mucus taking the appearance of a clear gunge. On occasions I found myself in public and taking a coughing fit resulting in the gloop making an appearance - now on a good day with not to many people around I could just spit it out discretely but on a bad day when people were about I had to swallow it again. ‘Gloop’ also started to make regular visits when I was in bed trying to sleep.

    In March 2008 I got a date for my endoscope examination. I arrived at the clinic and was brought to a theatre room where I met with my Consultant. He explained the examination procedure and I was asked if I wanted a full general anaesthetic or a local throat anaesthetic. I choose the local so was fully awake during the procedure (an option I would still choose). The anaesthetic tasted of rotten bananas a taste I actually liked remindi

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  • Posted

    Hi Lynn

    Sorry to hear of the problems you to have been having. It is however nice to know i am not the only one over here.

    Hope you get treatment soon as as it has turned me around completely. I am still having a better quality of life and it is unreal to be able to eat and no coughing at night time. i have put on about a stone in weight since mainly because i can't stop eating things. However because of my weight gain i have been getting recurrent heartburn/indegestion pain that are quite painful.

    i met with my consultant on the 31st December and he has give me the all clear to resume a full life so i will be getting back to the Gym that i have still been paying membership for.

    Please get in contact and i hope all goes well for you x

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  • Posted

    Thanks for replying Ray. I am still struggling and not eating solid food at all now. The pain, coughing and vomiting is not worth it so just surviving on hot drinks of horlicks and complan. Interested to know where you live and what hospital you attended. I'm in Killinchy, Co.Down and attend the Ulster Hospital.

    Lyn

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  • Posted

    hello again Lyn

    I am actually living in Bangor. I had my surgery in the Ulster Clinic as i was lucky enough to have private medical insurance. The Consultant surgeon that carried out the Operation on me is actually from the Ulster Hospital so if you are going there i am sure he will have an input into or carry out the surgery on you.

    In relation to the eating, i too was at a point were i couldn't eat because i would only have to bring it up again soon after eating. It is a terrible point and i know exactly how you are feeling. Hang on in there for a while longer and before long you will get out for a meal to Lisbarnett House.

    Ray

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  • Posted

    What an experience it is. It is late now and anyone is interested please reply and I will be glad to answer.

    In response to what I have read in this column, here is my case.

    20 years ago at age 34 my esophagus motility stopped. That is, there were no more contraction to bring the food to my stomach and therefore achalasia stepped in.

    10 years later age 44 my swallowing became nightmare and I lived through every symptoms you`ve all described with achalasia.

    At age 45 I`ve lost within 1 month 34 lbs and diagnosed with achalasia. I meet with the world`s top surgeon for cases of achalasia and he suggested the full thoracic surgery. Having never had surgery in my life I

    did research on the Internet and found that achalasia can be treated with surgery by laporascopy. 5 small incisions. 3 in my case.

    Within a month I report to Ottawa Canada Hospital where I go through surgery with minor difficulties because of 3 botox injections I had in the last 3 years. I didn`t know that botox injections left scars.

    3 years go by and it starts to re occur again and I now have a very large upper esophagus which I have to occasionnaly have to be upside down with a finger down my throat to empty the esophagus.

    I am now 55 years old and I`m back at the same point I was before surgery 8 years ago. I was warned 8 years ago that the chances of having esophagus cancer in the next 15 years was very high because of the reflux that would have to be controlled for the rest of my life with medication. Reflux could destroy my esophagus walls and cancer would set in.

    December 18 2008 in Montreal again doing the last medical tests, and 45 minutes of talking with the same worlds top surgeon I talked with 8 years ago, I decided to have it his way. A full thoracic surgery. My esophagus will be removed and my stomach will attached to my upper larynx. It`s going to happen before the end of march 2009. Waiting for the phone call.

    It`s a 8 hours operation. 15 days in hospital, 3 months at home to rest and eat normally like all the rest of you once again. Here is a link and pictures of how the surgery will go.

    [b:cb2ba27fae]http://surgery.med.umich.edu/thoracic/clinical/what_we_do/esophagectomy_faq.shtml [/b:cb2ba27fae]

    This surgery has been done at this medical facility in Michigan USA University Medical center on more that 2000 patients. I have no one to talk to who I know has had this surgery.

    8 hours on the table..hmm very frightning.I will be very gratefull if any of you have had this surgery in the past.

    I will be happy to read your comments.

    If there is no one out there who read this.. I will glady inform other on my return from hospital once it`s over to let you all know how things have went. Hang in there everyone.

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  • Posted

    You say you had 3 botox injections and you had minor complications with the surgery, do you know if that was related to having the botox. I have had 2 lots of botox and do to have the Hellors myotomy next week?

    I hope all goes well with you.

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  • Posted

    Hi,

    The botox injections leave scars which make it difficult for the surgeon to perform a proper surgery. Not that it can't be done, but if you can live without botox injections before the surgery, the better it will be for you and the surgeon doing the surgery.

    Botox injections in my case only lasted 3 to 6 months. Each injection bought be little time.

    Only time will tell if a full thoracic surgery was the best for me.

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  • Posted

    Hi Rlavallee,

    when you had your surgery 8 years ago, did they do a fundoplication to stop the reflux.

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