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| Ann's Personal Journey with Achalasia |
| My story (in a nutshell) I started with symptoms of the disease in 1990. It came slowly, a typical start. Food was becoming more and more difficult to get down and sometimes it had to come back up. I had all the tests, manometry, endoscopy, barium meal and 24 PH test and was given a 'possible' diagnosis of achalasia. I was given the choice of an open operation or a dilatation, which carried a 5% chance of perforation. At that time, neither option sounded appealing and I opted to attempt to deal with things myself. I was never invited back for a check-up and I think I was glad to carry on in denial. Things did get better. At least that is how it seemed to be to me. But in my ignorance, I did not know the long-term damage I was doing by allowing the oesophagus to distend and accommodate to allow me to maintain a normal ( medically perfect) weight. I could not go out for restaurant meals or anything equally ambitious, but I compromised and having a very understanding family and friends, I missed out on very little. I did however, always feel very alone with this. I had read about it in medical books, usually as a footnote at the end of the Digestive Disorders section. So I knew I could not be the only one in the world, but because I knew no one else with the disease I felt like some sort of freak. Thank goodness for the Internet. I found out a lot of information in general and accessed the Yahoo Group site in particular and was welcomed warmly by many kind and well-informed people who helped me with medical advice and emotional support. One of the founders of this site, Martin, was the very first person I met in person who also had achalasia. That became one of the most important and surreal days of my life. I was not the only one ! and I was restored in a deep and moving way. Since then I have met Brenda, Hannah and Beth. All these people are now life-long and special friends, not to mention my cyber friends on the Yahoo site. I have gained tremendous satisfaction by giving and receiving so much. On 30th May 2006, I had a laproscopic cardiomyotomy with wrap and at this date, 11th June, am recovering very, very well and regretting so much that I did not have this done sooner. I have to have a 'mushy' diet for 4-6 weeks and then we shall see what the future brings. But up to now, the food is NOT getting stuck, is going down and staying down. It is like a rebirth, and I am planning so many new trips, hobbies and events. I did not realise how much I had put my life on hold for the last 6 months while I was waiting to be admitted to the (NHS) Hospital. During the last 20 days since my pre-operative appointment when I was weighed, I have lost 9ibs in weight, which I consider to be reasonable as I spent 5 days of those 20 on a saline drip and 3 more on clear fluids alone. It now seems to have stabilised. I feel very positive and optimistic for the future. My message to everyone else who is at the earlier stages is: IT IS NOT AN OPTION TO DO NOTHING. (I have not got away with my self-negligence - my oesophagus is now like a spiral staircase !!!). Best wishes to you all in your achalasia journey. This is a disease you will die with, not of. With love from Ann, England xx You can contact Ann at: annandstuart@hotmail.co.uk |