Hi from the uk

[Guest guest]

Hi Jane,

I don't think many members of the group are from the UK. I wrote a fairly full description of my personal situation in an old posting:

message/achalasia/135

Incidentally my manometry was painless also.

I always recommend a thorough article which we found recently:

http://www.aalaparoscopic-surgery.com/achalasi.htm

If you need any advice then the group are the best guys to turn to. If you want to compare notes re the UK then either broadcast on the group or narrowcast to my email address which is charles@...

Cheers

Wemyss charles@...

-----Original Message-----From: sentto-1073445-325-973868206-charles=wemyss.co.ukreturns (DOT) onelist.com [mailto:sentto-1073445-325-973868206-charles=wemyss.co.ukreturns (DOT) onelist.com]On Behalf Of jane powellSent: Thursday, November 09, 2000 13:10achalasiaegroupsSubject: Hi from the UKHi fellow sufferersMy name is Jane (). I was diagnosed with achalasia about 6 months ago but have been suffering from it for several years. What a strange condition it is! Last July I had lost so much weight that I had a dilation which worked well but I was warned that it would not last and swallowing is now becoming difficult again. My consultant wants to carry out a Hellers myotomy in the next few weeks. Of course if the flu hits the UK in the meantimeit will probably be postponed! Originally my consultant wasintending to do an 'open' operation but when I asked about laparoscopic surgery she said fine she'd do it that way! I am particularly interested to hear from any UK sufferers who have had the operation or any other treatment. it will be interesting to compare it with the treatment received by our friends in the US. At least it won't cost me anything!By the way I had the manometry with no drugs and very little discomfort. A lot less unpleasant than an endoscophy!Cheers, Jane*********************************************************************Dr Jane Senior Research AssociateCSERGESchool of Environmental SciencesUniversity of East AngliaNorwich NR4 7TJTel: (44)(0)1603 592822Fax: (44)(0) 1603 593739j.c.powell@...http://www.uea.ac.uk/env/cserge/

[Guest guest]

Hi Jane

I am s a fellow UK sufferer.

Good luck with your op, you said you were having it in a few weeks,

which must be about now - please keep us posted, I live in Brentwood,

off the M25 and I am really keen to keep in touch.

As you say it is a very strange condition - I am going to have my 5th

dilation on Friday. I have been offered the myotomy operation but I

declined. Since reading the postings on this group I wonder if i

have made the right decision. Please do let me know how you get on,

sharing information will allow us all to make more informed decisions.

I was in a terrible state before I had my third dilation. Like you I

lost so much weight, I was just skin and bone, I would only visit the

bathroom to put my head down the toilet to relieve myself and that

was often just to get rid of my own saliva - I was just amazed at how

much saliva we can produce, especially when the oesophagus is in

distress and you wonder where it can come from when you can't keep

down fluids!! But I was even more amazed that I was allowed to get

into such a condition!

I had to sleep with loads of pillows because of the pain,wheezing and

choking but I kept slipping down the pillows. I really did enjoy the

advice from our fellow UK suffer - I will wear those sexy long johns

and to be quite honest who cares about a sexy pair of long johns when

you are wheezing, choking and regurgitating!

It has been years since I was that bad and I do not intend to return

to that way of life, if I can possibly help it. On Friday I hope to

regain some normality again and I really do hope that you will get

great relief from your op and I look forward to hearing from you.

Regards

[Guest guest]

Dear : I had the same thing - so much saliva coming up. Before I knew

what achalasia was (and before a good doc could diagnose me) I thought I had

major sinus problems causing this. I would stress up or eat something

(anything) and all of a sudden I would have to run to the toilet to throw up.

The myotomy was the best thing I did - my life is back to " normal " now.

Elena

[Guest guest]

Jane:

A quick note. I am to have surgery on Monday and tomorrow I start four days of clear liquids. Same routine. Hope yours goes well. I'll keep you posted on the results of my operation.

[Guest guest]

Jane -

Have not heard of these particular pre-op instructions, but it does make sense. I've read about post-op infections or other difficulties that came about as a result of the esophagus still containing food particles and apparently they are difficult to remove via endoscopy or other such procedures. It may sound a bit extreme, but probably worth the extra bit of "insurance".

Have not heard of fellow sufferers with IBS as well as achalasia. Sounds like adding insult to injury! Could be that once your system is weakened by one condition, you open the door for others??

Good luck on 1/9! We'll be thinking of you!

Carol

Hi from the UK

Hi

It is Jane , from the UK. It has been great to hear from you fellow sufferers and know that I am not alone, and am not the only person who has to eat standing up!

I have now got my date for the operation (Heller's Myotomy) on the 9th January, although it there is a flu epidemic the operation is likely to be postponed as there will be a bed shortage! I guess you don't have these problems in the US. With my letter from the consultant came a request not to eat for 5 days before the operation, clear fluids only! Assuming this was a mistake I contacted the dietician only to be told that my consultant likes to ensure the oesophagus is clear of any particles to reduce the likelihood of infection. I can have consume soups, fruit juices, tea and coffee etc but nothing solid or with bits in it. I will be given a tastless (not sweet) powder to add to the drinks which will add calories. Has anyone else been asked to starve before their operation?

Another thing I would like to ask you if any of you have IBS (Irritable Bowl Syndrome). I have been a sufferer from many years, although it is mainly under control now. It seems to me that IBS and achalasia are both conditions of gut mobility so it would seem likely to be a link. However my doctors think not. What is your experience?

Looking forward to hearing from you, regards, Jane

*************************************************************************************************************Dr Jane Senior Research AssociateCSERGE (Centre for Social and Economic Research on the Global EnvironmentSchool of Environmental SciencesUniversity of East AngliaNorwich NR4 7TJUK

j.c.powell@...Tel: +44 (0) 1603 592822Fax: +44 (0) 1603 593739http://www.uea.ac.uk/env/cserge/

[Guest guest]

Hi Jane,

I have only recently discovered this disease and it affects on me. I too suffer from IBS, but this is all so new to me that I really don't know what is connected and what isn't. I know if I have a bad attack where I can not get the food to go down for quite awhile, that usually within a few hours I will have diarrhea. Since I have only recently found out I have achalasia I have not been connecting anything else to it. I have had a very hard time finding a doctor that has dealt with this illness. I live in Springfield Missouri and I am told by the doctor I am seeing I will need to go to St. Louis if this gets any worse. I have had two dilations done in the last 6 months. I have suffered from what I thought was heartburn for 15 years only to discover it has probably been achalasia all along. I have not had the severity that I have read from other people in this group, but still I wake every night coughing and the heaviness in my chest. I get up and drink water and walk around and then go back to bed. I wish you well and would love to know if you find any connection in the two illnesses.

Regards,

Marilyn

Hi

It is Jane , from the UK. It has been great to hear from you fellow sufferers and know that I am not alone, and am not the only person who has to eat standing up!

I have now got my date for the operation (Heller's Myotomy) on the 9th January, although it there is a flu epidemic the operation is likely to be postponed as there will be a bed shortage! I guess you don't have these problems in the US. With my letter from the consultant came a request not to eat for 5 days before the operation, clear fluids only! Assuming this was a mistake I contacted the dietician only to be told that my consultant likes to ensure the oesophagus is clear of any particles to reduce the likelihood of infection. I can have consume soups, fruit juices, tea and coffee etc but nothing solid or with bits in it. I will be given a tastless (not sweet) powder to add to the drinks which will add calories. Has anyone else been asked to starve before their operation?

Another thing I would like to ask you if any of you have IBS (Irritable Bowl Syndrome). I have been a sufferer from many years, although it is mainly under control now. It seems to me that IBS and achalasia are both conditions of gut mobility so it would seem likely to be a link. However my doctors think not. What is your experience?

Looking forward to hearing from you, regards, Jane

*************************************************************************************************************Dr Jane Senior Research AssociateCSERGE (Centre for Social and Economic Research on the Global EnvironmentSchool of Environmental SciencesUniversity of East AngliaNorwich NR4 7TJUK

j.c.powell@...Tel: +44 (0) 1603 592822Fax: +44 (0) 1603 593739http://www.uea.ac.uk/env/cserge/

[Guest guest]

Hi Jane,

I have had achalasia for about 10 years. I have recently

been diagnosed with Irritable Bowl Syndrome. I have little time to

research it, but do feel that they may be related. My whole GI tract

is a mess. Best wishes to you with your surgery. I have never gotten

the courage up to follow through with it myself. Perhaps more later,

as I have to run.

Lynda

[Guest guest]

Good luck! I will be praying for you

[Guest guest]

Marilyn,

I have experienced achalasia for less than a year, and I am only 17, but I

know about the getting up in the middle of the night. In fact, it hadn't

happened for maybe a month, until last night. I wake up instantly with the

extreme pain in my chest and throat. My doctor says that that cannot be

helped until I have my surgery, on the 18th of this month. I hope you can

find someone with more experience. If not, go to Kansas City. I know there

are some good doctors for this disease there

[Guest guest]

Very good luck with the operation on Monday. Do you live in the States?

Regards, Jane

*************************************************************************************************************Dr Jane Senior Research AssociateCSERGE (Centre for Social and Economic Research on the Global EnvironmentSchool of Environmental SciencesUniversity of East AngliaNorwich NR4 7TJUK

j.c.powell@...Tel: +44 (0) 1603 592822Fax: +44 (0) 1603 593739http://www.uea.ac.uk/env/cserge/

Re: Hi from the UK

Jane: A quick note. I am to have surgery on Monday and tomorrow I start four days of clear liquids. Same routine. Hope yours goes well. I'll keep you posted on the results of my operation.

[Guest guest]

Hi I have just joined the groupe and before i start I would like to

appolagies now for any spelling mistakes as I am dislexsic.

I had a Harrington rod fitted for scoliocis in december 1980 prier

to that I spent a month on bone trackion. following surgery i spent 8

months in plaster cast and then 5 months in a brace once the brace

was removed I had on follew up checkup and was signed off being told

i would have no more problems with my back andI havent see any

specialist about it since.

I had 2 very saverer cures which are both still very odvious. I

dont know the possion of the rod I do know it covers most of the

length of my spine.

For the last few years I have been getting back pains my GP says

its sciatica gave me painkillers and realy dosnt want to know. Untill

seeing this site I was realy starting to think it was all in my head.

O do lean foraward slightly and if i want to stand up strate I have

to bend my knees and just thought this was normal after my surgery. I

woll be spending a lot of time going through old post on here trying

to fined out more as at the moment the pain is terrabel just trying

to live a normal life and look after my kids

Thanks for this site

[Guest guest]

Welcome to the group, !

You are not alone. Many of us have been through pain of 9 or higher on

a pain scale of 1-10. Many of us have also been to doctors who could

not or did not help or even diagnose our conditions.

Kathleen has written a post directed to you which should pop up at the

site (or in your email) any time now. She makes some very helpful

suggestions. I am also going to track down some information that Titch

(whom Kathleen references) posted here regarding the UK situation.

Glad to have you with us. Hang in there, and stay in touch, please.

Best,

(site owner)

>

> Hi I have just joined the groupe and before i start I would like to

> appolagies now for any spelling mistakes as I am dislexsic.

> I had a Harrington rod fitted for scoliocis in december 1980 prier

> to that I spent a month on bone trackion. following surgery i spent 8

> months in plaster cast and then 5 months in a brace once the brace

> was removed I had on follew up checkup and was signed off being told

> i would have no more problems with my back andI havent see any

> specialist about it since.

> I had 2 very saverer cures which are both still very odvious. I

> dont know the possion of the rod I do know it covers most of the

> length of my spine.

> For the last few years I have been getting back pains my GP says

> its sciatica gave me painkillers and realy dosnt want to know. Untill

> seeing this site I was realy starting to think it was all in my head.

> O do lean foraward slightly and if i want to stand up strate I have

> to bend my knees and just thought this was normal after my surgery. I

> woll be spending a lot of time going through old post on here trying

> to fined out more as at the moment the pain is terrabel just trying

> to live a normal life and look after my kids

> Thanks for this site

>

>