My story so far, Written from my hospital bed

Just finished reading your report and wonder what part of the country you live. I am from the North East have had symptoms of Achalasia for 16 months, finally diagnosed 2 months ago after yet another endoscopy but I have been unable to eat food at all for over 2 months, am existing on liquids and these are now getting so difficult to get down, often coming straight back up, I don't feel I can go on much longer. Spoke to the consultant a month ago who requested an early manometry with botox at the same time but after hearing nothing contacted Patient Liaison yesterday who, acting on my behalf, managed to get me an appointment for 27 November. When I said I didn't think I could manage until then she phoned them back and the consultant happened to be in the clinic at the time and has me in for next Wednesday.

When I appealed to my GP for help, all I got was \"It's not serious\" and when I finally went, in tears because I could then get no food down at all, she very reluctantly prescribed ensure - one a day but this is now so painful to get down I am thinking of giving up altogether. I am just so tired of trying to force any nutrition down at all.

Any advice would be appreciated.

Jean

Obviously i am not a professional regarding this issue and can only account from my own experiences.

I live in Leeds and to be fair reading all the other account of horror stories i seem to have been treated extremely well. (although i also feel a little agrieved)

I believe the reason i have been seen so speedily is due to my loss of weight, i have lost 2 stone in 6 weeks and wasnt the largest fella to begin with.

I was in exactly the same possition as you, i couldnt eat anything, ( i tried milkshakes, vitamin drinks, build up shakes but nothing worked) i couldnt take tablets, it was extremely uncomfortable to do anything energetic and at the end was having dizzy spell and became really lethargic after walking up stairs at home. Please read my further post below to see where i am at now.

Really hope you get relief from this horrendous problem as soon as you can.

[size=18:c053ce2b98][b:c053ce2b98]UPDATE[/b:c053ce2b98][/size:c053ce2b98]

When i left this site yesterday i was sitting in hospital and was advised that i had an appointment for a Botox injection administered by Endoscopy at 4.30 today.

Well i was taken down for the treatment at 10.45 as they had a cancellation.

I was wheeled into theatre and spoke to by a doctor regarding the treatment and after he consulted my consultand they decided to cancel the Botox treatment and admit me for Keyhole Myotomy Surgery next week.

I am not sure of what happens next, i am sat waiting to hear of my transfer to a near hospital and await the operation.

Only hoping i can go home for the weekend for a little relief.

I must say that any treatment i have had so far has not been painfull more uncomfortable.

I will update again when anything further happens.

Not sure if this helps anyone but i will continue to share until hopefully i have had my opreation and let you know of any problems there after.

Hi Mart.nat

Sounds like things are progressing well for you .... hope the operation goes well, presume it's in Leeds General Infirmary?

If it's any reassurance I had my operation in LGI, albeit 10 years ago, and can honestly say I couldn't have wished for a better level of treatment and so far all has been better than I had hoped for :-)

Keep us posted on how things go.

Richard

Hi Richard

Thanks for that, I believe i am being transfered to Jimmys on Monday and the operation will take place some time throught the week.

Its great to know that your operation went so well and your doing good.

To be honest like many others do, i have read numerous accounts on the web of complications and on going problems after (even long term)

I think all i am hoping for after initial recovery is that i am able to eat a reasonable meal with having to be sick after.

Good to hear a possitive feedback within my area, hope you continue without problems.

Many thanks

Martin

[size=18:d2758ef1c3][b:d2758ef1c3]UPDATE 28/10/09[/b:d2758ef1c3][/size:d2758ef1c3]

Well what a difference a couple of days can make.

After waiting in hospital to be transfered to a near hospital for my operation for over a week, i have now been sent home with an out patiants appointment for tomorrow morning.

I am manageing to keep down the suppliment drink that i was provided by the hospital and i am also eating choc (melting in my mouth not swollowing chunks) sheapards pie with lots of gravy and plenty of ice cream. I will say that after reading on here about fizzy pop helping i have tried it and must say it seems to help with digestion.

My only hope now is that i am not put on a waiting list for a number of weeks as i am unable to work, due to tiredness, dizzy spells and generally constantly feeling sick.

I will update as soon as there are any developements.

[b:1607abc84a]UPDATE[/b:1607abc84a]

Just to keep all informed, I attended my appointment with my surgeon today and i must say from my own point of view i am much happier now i have met with him and had all explained.

I have been booked in for my surgery this coming Tue (2nd November, my birthday by coincedence)

He expects the operation to take between 60-90 mins to complete and is confident that barring any complications i should be out within 48hrs.

He has obviously aslo warned me that this is an ongoing condition and regardless of how well the surgery goes there may well be a need to repeat it in the future (months to years).

I now have the comfort of being at home for a few days before my operation, i will come back to this site as soon as i am able after my operation and update with outcome every couple of days, good or bad i will be as honest as i can.

[/b]

Martin,

Just wanted to wish you well for the operation next Tuesday :doctor:

And get working on some recipes for liquidised food. It doesn't sound appetising but believe me, you'll savour every single morsel :chef:

Richard

[size=18:ab231c5900][b:ab231c5900]UPDATE[/b:ab231c5900][/size:ab231c5900]

Well where do i start.

I had my operation on Tuesday 3rd Nov at 3pm, to my astonishment i am now sat at home in front of the tv (well laptop)

When i came round from my op, i was pleasantly supprised to how little pain i was in but i think this was down to the morphine i was given during the op. I had to spend around 5 hours in recovery as my oxegen levels were low and was then transfered back to the ward.

I was given paracetamol only as i had no pain to shout about. Although there was the obvious discomfort from the 5 holes in my stomach from the key hole surgery. (these did not cause any pain at all)

I would say that the only pain i did have at this time was in my shoulders, this apparently was from the air that was pumped into my stomach/chest to make room for the operation.

The pain in my shoulders was bareable and once i got comfortable in bed it lapsed.

Throughout the first night my obs were checked every 30 mins or so, so i didnt sleep much.

The following morning the first thing i had to do was get out of bed and walk around, this again was uncomfortable but would say that was mainly to the plasters/bandages pulling on my stomach.

I was drinking within an hour of waking and offered soup at lunch time and for tea it was fish in parsley sauce with mash potatoes.

I must admit i ate all the above slowley but all went down witout any advese affect. WOW.

Later that day i was advised by the sister to go for a walk through the hospital with my partner and get my lungs working. I was finding that sat in bed all day i was taking short breaths and wasnt stretching my stomach muscles.

To my amazement we walked about 1/2 mile and i actually felt so much better when i got back, i became much more mobile and was able to sit and stand with much more ease.

And here we are now, i was awoke at 7am for my obs taking, i was in the shower at 8.30 and seen and discharged by my surgeon by 9.30.

I have at no point up to now regretted undergoing this operation, i have not been in any pain that i have needed no more than paracetamol for. (take it anyway even if you feel you dont need it)

I would also say that i chose to take soluble paracetamol as it also encouraged me to drink more water.

I will say that i understand that this is still very early after my operation and there can be many complications to follow, (touch wood they wont happen)

My only tips i can offer up to now are.

Drink as much as you dare after the op, it helped me go for a pee which relieved pressure on my stomach

I found that walking although a little tight around my stomach area really did help me become mobile much quicker.

Dont do too much, when you feel the strain/tired. HAVE A REST.

I dont know of a cure for the pain in my shoulders and still have a little now, i have just been told its common but passes naturally. Its bareable but sitting still helps.

I have been advised to keep on mushy foods for 3-4 weeks. Trying Ready Brek, weetabix, soups, rice pudding, cottage pie, cod in parsley sauce, yogurt, ice cream etc etc etc, anything that will slide down easily.

Obviously everyones situation is different and i can only comment on my own circumstances, if anyone has any questions or advice for me on diet feel free to ask/let me know. I will come back and update of how i am getting on soon.

Best wishes to anyone either pre or post op.

Martin

Pleased to hear the op went well and you are happy and satisfied to date.

I had the botox insertion on the same day as you had op. This is the fourth endoscopy in less than a year and each time I have been aware of the instrument in my throat, gagging and excess saliva. The experience for me is horrendous and my doctor wants me to go on having this treatment when required rather than surgery. As yet don't know how long the effects will work but quite happy with results up to now although I did suffer dreadfully yesterday with acid reflux, which I hadn't experienced since the gastritis cleared but up to now okay today. The achalasia symptoms started July 2008 at the same time as the acid symptoms, which is when they discovered gastritis and I'm sure they went on assuming this was the only problem. I've had CT scans, barium swallows and a number of gastroscopies and they maintained, apart from the gastritis, they were all normal until I reached the stage where I was living on one Ensure milkshake and one 300g cream soup (mushroom and chicken had to be sieved) per day and the final gastroscopy showed Achalasia. I cannot believe something didn't show up. Achalasia doesn't happen overnight.

Anyhow, let me know if you continue to be satisfied with the surgery as I speak to both my consultants on 1 December, when some long-term decisions should be made.

Jean

[b:75cb4b6291]UPDATE

Its now 12 days since my operation and i thought i would take 5 mins to update how i am progressing. (good + bad)

Since my last update on the 5th Nov things have really progressed.

As per instructions i followed a sloppy diet for 5-7 days and only started to eat a little more substantially when i felt i was still hungry regardless of how much i ate.

I also found that eating sloppy and small amounts of food left me with heartburn (maybe due to excess acid)

I am now taking anti acid tablets (Lansoprazole 30mg, 1 per day before breakfast) and i have not had heartburn for over a week now.

My doctor also prescibed me painkilllers (Solpadol) for shoulder pain due to the air pumped into my stomach/chest to make room for the operation) this has now passed and i no longer take the painkillers.

I do still get a little stomach ache but nothing to moan about.

On a personal note at this time i could not have hoped that the operation and any after affects had gone so well. I am now back at work, although taking it easy and i work in finance so there is no lifting. I didnt drive for 10 days after the op as i felt uncumfortable with the bumps/speed ramps in the road.

I am eating pretty much what i wish but must admit i have not yet tried hard meats (steak,pork,lamb,gammon etc) i have had my fair share of chicken which goes down well as long as i chew it well.

I make sure i drink plenty throughout the day not only when i am eating but whenever i am able, i just find it helps me go to the for a pee regularly which helps relieve any stomach ache.

On a possitive note, i dont suffer with any reflux or strong heartburn that many comment about, i have not felt sick since the operation and apart from the initial couple of nights following the op i have slept through the night every night (much to my partners satisfaction as much as mine) I have not coughed or been sick at all.

I dont know if it has made a significant difference to my recovery but i also had what i believe to be called a Nissen Fundoplication (stomach wrap) completed at the same time as my op. This i was told by my surgeon would stop the acid build up and help with reflux. Congratulations to my surgeon because this certainly seems to have been succesfull.

I have a follow up consultation with my surgeon on the 7th Jan 2010 when i will shake his hand and offer him a nice bottle of Whisky (with my regards.

Please if anyone has any questions they feel i may be able to answer feel free to ask. Please dont hide away with this complaint/problem. IT WONT go away on its own and IT WILL get worse.

Good luck to one and all, if i have any further things to add (good or bad) i will come back and update later.

Wishing you all the best.

Martin

[/b:75cb4b6291]

I am glad things are slowly starting to get better for you. I have to say I am in the North West of England and have had this condition for 15 months, I have lived on soup and meal replacement drinks for a number of months now. And have still had no treatment, so i cant help but envy you. Its great to think that one day I might be in a similar position to yourself. Good luck with everything.

Great to hear the op went ok for you. I'm due for heller on Friday, so my time is coming very soon. Starting to feel an little anxious but am looking forward to being able to eat a Christmas dinner of sorts. Nothing can be as bad a being sick 3 or 4 times a day, although the weight loss for me (3.5 stone) is a bonus of sorts. Are you generally good with pain as that is a fear of mine, the after affects? How did you feel when you ate that first food after?

Hi again Martin,

I'm really pleased for you.

Glad all went well with the op and post op,

it sounds like you're well on the road back to a more normal life.

Take care of yourself!

[b:f18a1005ed]UPDATE[/b:f18a1005ed]

Hi All

Just a quick update as to where i am now, If you have followed my story so far then you will know that i had my op on the 3rd Nov this year.

Well if i am being honest, I FEEL GREAT.

Pain after the operation was minimal and bareable, the only real discomfort i had was in my shoulder due to the air that is pumped in to make room for the surgeon to work. This seems to release naturally through your shoulders over about 10 days after the operation, take good painkillers and its ok. PLEASE dont do to much when you get home, REST.

I must admit i did try to do a little to soon, spend a few days sat with your feet up. If you dont get the pain in your shoulders to harshly, WALK as much as you feel comfotable as i found this really helpfull. I took the plasters off within 2 days after the op and this made me feel much better as i could stand up straight and didnt feel the pulling feeling they caused.

I didnt drive at all in the first week after the op as i didnt feel able to bend in and out of the car too often and our street is littered with speed ramps (not good)

During the last 4 weeks since the operation i feel i have progressed really well ( with 1 exception i will explain at the end DONT WORRY)

I have now started eating reasonably as normal. I have not eaten any dark meats yet ie, steak, pork, lamb etc.

I eat chicken and mince without any problems.

I am eating good portions of meals and if i am honest i have eaten all i have been given on my plate in the last 2 weeks ( i do find drinking cold lemonade helps the food settle. I dont get any pain at all when eating but can tell when i have had enough and just take a good drink and carry on as normal, this has become much better this wee and rarely need a drink even though i find myself drinking just out of habbit now.

My first 2 weeks have apssed since returning back to work and without problems although i am shattered come friday night. We have been out for Sundya lunch for the last 2 weekends and WOW its so so nice to be able to sit through a whole meal without issues, no feeling bloated, no feeling sick. Just take it slowly and have a little drink.

Roll on xmas dinner haha.

The exception i mentioned earlier is nothing to worry about but keep an eye on, since my operation (now 4 weeks) i still have my stitcges in. These i was told would dissolve within around 14 days. I have an appointment at my doctors tomorrow to have them removed. They are becoming a little red and a little sore. PLEASE make sure when you leave hospital CHECK if you need to make an appointment with you own GP to have them removed if they dont dissolve.

All in all folks, WHAT A DRAMATIC change in my life this opperation has had on me and my family.

My partner thinks she has a new man in her life, no more coughing through the night, no more being sick though the day/night. (not even felt sick once since the op)

I know i am better with her and the kids as i am more relaxed and settled.

I have more energy now and we can go out and eat as a family on a weekend which we have not done for at least a year.

Oh and i am gaining weight slowley (yes i can tell already)

PLEASE ANYONE whom has concerns about this operation in my own personal circumstance i would do it over and over again if needed (and still may need to i know)

If anyone has ANY questions please feel free to ask away, i wont lie and will answer any questions i can based on my own experiences.

Good luck to ALL who suffer or live with a sufferer of ACHALASIA, dont suffer in silence get treated asap.

ITS CHANGED MY LIFE (fingers crossed FOREVER)