My experience.
Posted , 3 users are following.
I am a primary school teacher and am 29 years old. I have had symptoms of Achalasia for about a year, but got really bad about 3 months ago. Could not eat much food and if I ate too much (not a normal size meal) I'd bring it back up. Had pains in chest, back, sore throat, waking in night coughing etc, feeling food was getting stuck in back of throat, loss of weight and even found it difficult to drink water!! 
Went to GP who referred me to Ear, Nose and Throat specialist, had to wait 3 weeks to be told it's acid reflux take these tablets and have a barium swallow. Waited another 2 weeks for barium swallow appoitment where radiologist told me it was Achalasia and would not continue to do acid reflux tests. It took 40 mins for 2 mouthfuls of barium to go in to my stomach and had not all gone through!! :shock:
I was then refered to Gastroentology and sent an appointment for end of July! Phoned hospital and went back to GP to say that I could not wait that long as now I've lost at least 2 stone and planning to get married in December. Was sent an appointment for Friday coming. Assuming it will be disscussing my results of barrium swallow and where to go next. :?
This illness is awful, did not realise how much of life revolves around eating and drinking! It has affected my social life and although my fiance is very suppotive I know it is affecting our relationship as well as I can't go out for drink, dinner etc.
Just wondered if anybody else in London area is on this forum and what their experience is/was? Want to get better soon so I can put on some weight for my wedding 
Good luck to all out there with illness, reading other peoples experiences it seems things can get better! :D
0 likes, 34 replies
vickyg
Posted
Well what can I say if you can have the surgery have it, had a nice lumpy bowl of veg soup for my lunch!!
I went into hosp on tuesday evenin and was nill by mouth from 12 midnight onwards. They took me down to theatre at 4.30pm on wednesday and I was back on the ward at 9.30pm.
The experience of going under and waiting all day was awful. Wednesday night I was uncomfortable but still out of it, the nurses took obs every hour so very little rest. Two of my holes were bleeding alittle as well. Had awful pain in my shoulders apparently their are nerves in your stomach that are connected to your shoulders!!
Woke Thursday still had tube in my nose which was very uncomfortable and had to wait till 12.30 for surgeon to come and take it out. He said surgery had gone well and I could have liquids. Drank a cup of water what an amazing feeling. But got carried away and drank too much so ended up with really bad pain in tummy and shoulders and had to have a slightly stronger painkiller (had only been on paracetamol).
A slightly better night rest but holes still very uncomfortable and could not move around in bed much. On friday started to eat sloppy foods, ready break, soup, custard with lots of water/squash to help it go down. Surgeon said I could go home Saturday. still pain in shoulders and twinges in tummy but eating and drinking again!! Surgeon said to keep to a soft diet no bread, fizzy drinks or big lumps of meat for at least 2 months.
I'm home now and feeling ok, eating little and often, had spaghetti last night which went down well. Have to drink lots to help food go down and burp lots while eating although this is calming down now. It is 6 days since op and I'm moving round fine just a bit slowly.
The holes or lines are all healing up nicely only pain is taking micropore dressings off each day they are very sticky and catch all the little hairs. I am going to see surgeon on Thursday for check up and will see him again in 2 months time.
I am also taking acid tab as a precaution at the moment.
Please please if you have achalasia and can have the operation, please do, it's only been 6 days for me but people I've spoken to say a sound so much better. It's amazing what a little bit of food in your tummy can do !!!
Guest
Posted
I can't wait to have my surgery now. Reading everyones experiences has definitely put my mind at rest.
Please let me know how things go and good luck with the next few weeks. xx
kaybee
Posted
I am waiting to go to consultant and it looks as if I will be going through the same operation a syou have just gone through
Many Thanks for keeping us up to date with what you have gone through
All the best
Guest
Posted
vickyg
Posted
Take care.
Guest
Posted
Take care and keep in touch. xx
Guest
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vickyg
Posted
It has been about 3 months since op now and feel good. Have good days and bad days and I've noticed that some foods get stuck on the way down so I have to stop eating and breath, drink some water etc. It does eventually go down. Once again as I get closer to my wedding day I have some stressful days and these days food seems to get stuck more or I just generally feel unwell.
Idon't seem to have put on any weight either.
Obviously being able to eat some food is great but it is still a debiliatating illness as eating out is difficult as food gets cold or I just eat part of the meal.
A small price I suppose.
How are yoy Rie and your new baby?
Have you had a date yet for surgery?
Guest
Posted
Its lovely to hear from you. May be the stress of the wedding is making the swallowing worse. I know when I get stressed or upset I don't even try to eat because I know I won't be able to swallow anything. Hopefully once the wedding is over you may be able to relax and be able to go out for a nice romantic meal with your new hubby.
Baby is doing really well, she is 7 weeks. I am still waiting for my op. I contacted my surgeon on Monday and apparently I am next on the list. He has no operating lists until the New Year, but if a cancellation comes along I will be thought of first.
Please keep in contact it will be great to hear about the wedding news. xx
Guest
Posted
I had my preassessment for my Hellor's myotomy yesterday. The Nurse Specialist initally said that I was going to have an open procedure, not keyhole surgery as initally thought. But I questioned this and they said they would attempt keyhole surgery and if this was not possible they would open me up, which obviously has worried me a bit.
Did your surgeons suggest an open procedure as reading the forum everyone seems to have had keyhole surgery. Could anyone help?
Thank you.
Guest
Posted
no surgeons always said keyhole, did they give you any idea why?
3 weeks till big day, doing ok, good days and bad with the swallowing though! But still worth it.
Hope you are hanging in there and baby is doing well.
Take care
Vicky x
Guest
Posted
My consultant was very very experienced in keyhole surgery for this op and my op didnt go to plan. My g.p. said he would always go for open plan so they could see better what they were doing. You have to do what feels right for you. Surgeons do still do this op open plan and it doesnt mean they arent good. Obviously the scarring is an issue but my stomach looks like a dot to dot (at the moment) anyway.
Is your consultant used to doing keyhole?
Hope this helps a bit. Its very difficult anyway to undergo this op without further worries. All the best.
Guest
Posted
Good luck Vicky for the wedding, I will be thinking of you. I also hope you all have a wonderful Christmas and lets hope the New year brings lots of happy swallowing.
Rie xx
P.s Are you on Facebook?
Guest
Posted
Guest
Posted
Can I ask, How long after your surgery did u stay off work?
Iknow you are getting reflux etc. but are you experiencing much pain/discomfort.