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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.
3 likes, 60 replies
rlavallee
Posted
Yes they did the funduplication 8 years ago. The surgery was by laparascopy. Everything went very well but it only lasted 3 years.
Roger
Guest
Posted
Now i am totally scared and i feel a bit disheartened.
Surely however everyones case is different. This would depend on say how long you have had achalasia that has went untreated.
In your case your swallowing problems started when you were 34 but not treated until you were 44 thats 10 years of damage to oesophagus possibly stretching beyond a state in which it could ever repair or reduce.
I have read that the oesophagus in everyone with Achalasia will be damaged to a degree but even the most dilated will at least reduce by 10mm after surgery. However there seems to be an argument in the medical world that people with a severly and grossly dilated oesophagus would not really benefit from the Hellers Myotomy and the best alternative is it's removal.
Could it be that after 10 years of having the condition when you were at 44 years old the Consultant thought your oesophagus was so badly dilated that his recomendation was for it's removal.
You then had the surgery which was 11 years ago and after 3 years the symptoms returned but again have went untreated for 8 years. I would say that after that untreated time 8 years and the previous damage before the operation some 10 years that you oesophagus was in a bad way and therefore the only real option is to remove it.
Have you had tests on the lining of the oesophagus since that have shown damage due to reflux (or Pre cancerous cells-Barretts oesophagus ) which if they prove positive increase you chances of cancer.
I am sorry to sound dismissive towards you that was not my intention but you scared me a bit here. I wanted to place my experience on here to allow others maybe a bit of hope that they can get back to some form of normallity after being diagnosed with achalasia. My experience included the Laproscopic surgery which is the foremost treatment for this condition and is the first port of call that Surgeons will use to treat the same in this day and age.
As i have said the treatment will depend on the condition of the sufferer and not everyone will maybe have such a severe case that you have for whcih i am very sorry to hear. You have dealt with the condition for a long period of time and i totally feel for you.
What i can say is that my Surgeon is alot smarter than me with a greater understanding of the human body than i have. He informed me of the 2 main reasons why surgery is the best option 1. It is to allow me to swallow food improving my life and more importantly 2. The surgery is the best option of keeping the oesophagus clear of food debris reducing your chances of cancer and further damage/dilation of the oesophagus .
The fundoplication part of the operation is to help reduce the chances of having acid reflux however certain factors i.e the gaining of weight or type of food consumed will increse reflux even if the fundoplication has been carried out or not. What is important for a person who has had the surgery if they do suffer from reflux to go onto an inhibitor drug to stop this. If reflux is stopped again the chances of cancer are reduced.
Again i am sorry to sound dismissive but there are people out there who are looking for some from of hope for this condition without drastic surgery or cancer being mentioned. Due to the limited period that Laproscopic Surgery has been performed an accurate record has not been made for how long it's benefits will last however a high percentage are still going strong after 10 years. On reading other articles some would say it is down to the skill of the surgeon. If the condition does return a full open Myotomy will then be the next surgical choice this is still before thoracic surgery which is the last option.
Anyway i have ranted on and again it is a forum for discussion and debate and i wish you all the best for the horrible time you have had with achalasia and for the upcoming surgery that i hope goes well and you recover quickly.
Ray
rlavallee
Posted
Thank you for your email. I am very sorry if I frightened you in any way.
You are totally right all along by saying that damage to my esophagus could be well due to having gone so long without it being treated. For some strange reason my choking only started really about 1 year prior to my last surgery 8 years ago. It took one year to get all the medical tests done and medical appointment before I saw a surgeon that would operate.
Then 3 or 4 years went by without any problems until I start to have occasional periods of choking. But then I would go 2 or 3 days on liquid diet to give my esophagus a rest and then I could be a month maybe without any distress what so ever. Of course my diet would be very strict. No alcohol, or spicy food whatsoever. Nothing that would irritate my stomach. I was just buying time and well I bought another 4 years until last year where the choking started again and became more and more frequent. I can go now sometimes one week or two without any episodes and then all of a sudden some stress related event will happen and I'll choke up again and further damaging my esophagus.
So here I am now without any choice to have the esophagus removed and I thank God that's it's not because of cancer.
Take care my friend
Roger
Guest
Posted
Have you had a second opinion to see if there is an alternative approach.
Guest
Posted
Please can you let me know whether any of you have had botox injections and had a successful laparoscopic surgery. Thank you.
rlavallee
Posted
I wouldn't worry if I were you. You shoudn't be in hospital more than 3 days. you will walk around very well. Of course no lifting and lots of rest for appx 1 month. After that you should be back to normal and eating normally.
Like I mentioned in my other replies. I had 3 botox injections prior to my surgery 8 years ago and the of course the botox injections leaves scars.
So for the surgeon to do a proper surgery on you it will be slightly difficult to to a dilation around the scars but it can be done. No problem at all.
I'd like it very much if you came back after your surgery and talk to me.
You can email me at ****@****.
Good luck, My prayers are with you. Talk to you soon.
Roger
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rlavallee
Posted
Thank you for your reply.
In answering to your question.
There is no second opinion. I have seen doctors in Ottawa, in Gatineau, all surgeon and they all referred me to XXXXXXXX in Montreal. He is world renown has Mr Esophagus. There is no doubts that he is the best. I should of listened to him 8 years ago. This doctor has done over 300 surgery exactly like the one I`m going to have. So I feel totally confident.
No other doctors around here had the experience to undergo such surgery with total removal of the esophagus.
Take care
Roger
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Mellyelly
Posted
Guest
Posted
Guest
Posted
What a few days….. I was admitted on Thursday 22 and went down to theatre at about 2.15pm ish (I was so scared). The Anaesthetist and nursing staff were very good at keeping me calm. The Anaesthetist put a cannula in my arm and said he was going to put me to sleep. I went through the doors to the theatre looking at the clock it was 2.45pm and thinking “hang on, I am still awake”.I woke up in recovery a couple of hours later and the next couple of hours are a bit blurry.I wake up at about 7pm ish and didn’t know what they had done (they were going to attempt key hole, but he said he may have to open me up if they could not reach it). I had a oxygen mask, was on a drip and had a nasogastric tube ( a tube that goes from your nose to stomach – not very pleasant) and I heard that I had a catheter as well. My husband kept asking me what they did and I was a bit woozy, so he asked the nurses and they had a looked, thankfully it was keyhole.Thursday night I mainly slept, although I could not get comfortable because of the nasogastric tube and because had nothing to drink since Wednesday, my mouth was very dry and it kept scrapping at my throat making it very uncomfortable, I kept asking the nurses to remove it because I was getting a little distressed with it in and finally once the Consultant came round it was removed!
The Consultant said I was allowed 30mls sips of water and was pleased with the op. I was sore, I had to get help in and out of bed, but I didn’t feel too good so I stayed in bed most of the day in bed. In the afternoon it all kicked off.My temperature went up to 39.9oc, my heart rate was going off the scale, oxygen sang and BP all over the place. They called for the on-call Registrar and doctors, I thought I was going to dye. After numerous of blood tests, a chest x-ray, ECG, fans to cool me down and other tests they moved me to a side room to keep a closer eye on me. They found out I had an infection, but where? So I was started on antibiotics. I woke up Saturday feeling a lot better.They found out it to be a urine infection, but where a bit worried it may be related to my op so I had a gastrograffin swallow, which confirmed no holes but my stomach was a bit distented. By Saturday evening the catheter was removed. But I had to wee into a bucket to be weighed. My Consultant came in on Saturday to see me, by then I was starting to get a little hungry and he said I was allowed some jelly and ice cream. . I felt good and could get up without the aid of help and started to feel myself again.
On Sunday, I had jelly for breakfast, dinner and tea. I did ask whether I could have soup or something else (I am not a huge fan of jelly), but as there were no doctors they said I had to wait and see the consultant. I also developed a rash all over my body, which was itchy and my antibiotics were changed.I was mobile and had to take ‘Betty’ (this is the name I gave to my drip) everywhere with me.
Monday the Registrar came round by then I was getting down I really wanted to get home and see my kids and fed up with jelly (the thought of jelly made me feel sick – even now it does). He said that I could increase my fluid intake to ‘free fluids’, coffee, tea, soup (finally something savoury) and custard. I was also told that I may be able to come home Tuesday.
Yesterday the Consultant came round and said that my white blood cells were not reproducing enough (something related to my infection), but because I live near the hospital I was allowed to go home, but had to let him or my GP know if I felt unwell. I was to have a sloppy diet and see him in 6 weeks. I was also seen by the Dietitian who suggested 3 Forticips a day. I was discharged at lunch time.
Today Wednesday 28th I feel ok, I am still covered in the rash and I am taking Piriton and I am hungry. I am not really taking any painkillers. It feels a bit sore when I cough or laugh but it’s something I ca
Guest
Posted
Great to hear you have been through it however not so great to hear of the difficult days after the Op.
I hope each passing day will allow you to feel the benfits of what you have been through and maybe let you have a taste of some normality again.
I to had the eating and confusion problem. There didn't seem to be any nursing staff who could advise me when i needed it i.e at meal times when in Hospital and trying to get a Doctor or Consultant at these times was impossible. The nurses didn't really know a great deal about my condition or about alchalasia as they hadn't seen anyone else with it.
My consultant basically told me the following about eating: - It will take about 10 days from the Op date for things to start to mend down there and this is the risky time for perforations to happen. However in relation to eating after my first full day of having meals i.e he told me i could have scrambles eggs, light cereal etc to begin with. This will allow you to feel if you can cope with eating. After he seen that i had no real problems he actually told me that he wanted me to experiment with my food so i had stew, beans, cottage pie, more scrambled eggs basically any soft food. I actually felt so good with the eating i had some toast and washed each bite with plenty of tea.
Again after about 4-5 days of the above he again spoke with me and as i was having no real problems he told me to return to a relatively normal diet after the 10 day period. He also said not to be to disheartened if certain foods stick as that is part of the experimental side of things and that the food itself will pass into the stomach if you give it a bit of time. By that happening you will learn what you can eat or what you can't eat.
I find that now some 11 weeks after my Op that certain foods do stick but with a bit of time and some water or liquid that it eventually goes down. On saying this when the food does stick it is not with the same type of uncomfortableness I got before I was treated. Maybe i am ripping the backside out of it but i have had, burgers, chinese, indian and even pizza's meals some harder than others to get down but they do go down with a bit of liquid. Difinitely the symptoms i had before the Op have been greatly helped.
If i were you just take it as it comes and only do what you think you can do, a bit at a time and eat small bites and chew well. Dont panic if things stick as i did the first time it happened.
Hope this helps a wee bit
Ray
Guest
Posted
Im glad its allover for you, and the start of your recovery.I also had to have sloppy or for me purreed foods for weeks. I bought a blender and blended everything. Sunday dinners, spagheti bologese almost everything to a soft texture. It sounds odd but the taste is the same. I got a taste for ice cream and yogurt and blended banana. just experiment. u prob wont feel like much of it anyway. Things do improve and you will know wen u want to try something with a bit more substance.
Guest
Posted
I greatly appreciate reading the experiences had by all of you. Most of it gives me a sense of light glimmering at the end of the tunnel. I almost know what to expect having had the opportunity to read your experinces and I've learned a lot about this condition. I'm off the the Ulster Hospital tomorrow for a Barium Meal Swallow but I'm told that this is a procedure used to confirm Achalasia.
I know the consultant will talk through my options but I'm a bit reluctant to agree to anything other than the surgery. From what you all say, it appears to be the best treatment.
I'll keep you posted.
Lyn
Guest
Posted
I managed to eat a omelette at lunchtime, which was really good but I got a bit worried that it may get stuck so I stopped. Psychologically it is going to get time before I can eat normally again. When I was eating I do get funny sensation in my oesophagus when I swallow, obviously as it is new it could be the healing or its working. I am so paranoid and as I have not experienced the natural way of swallowing for such a long time, its something I am going to have to get used to. But all in all things look positive.
I will keep you all posted as it is still early days. Best wishes to you all xx
Guest
Posted
I am getting a burning pain and discomfort in my chest, which I put down to acid reflux, but I also get this in my jaw too. I have read somewhere that this related to achalasia. Has anyone else experienced this?