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Hi everyone, I really hope you are all getting further along with any treatment and, are as well as you possibly can me. I have unfortunately hit a brick wall and, feel the consultants and, more importantly the administrative staff at the hospital are turning me into a crazy lady. I am at best very diflated. As some of you are aware I was due to undergo an oesopegetomy but, my treatment so far has been nothing other than a “Shambles built on sticks” Along side the dysphasia, chest pain and, being unable to swallow almost anything! I have been very distended for almost 9 weeks now to the point that I am suffering incredible breathing difficulties and, severe abdominal pain. I’m exhausted so I will attempt to keep this to a minimum ha ha. After the catologue of errors at my appointment to have the endoscopy my gastroenterologist was Uber concerned about my distended abdomen and, he felt that it was due to something happening below my destroyed sphincter and, that it was maybe at that point leading into my stomach that was the problem. He requested an URGENT PRIORITY CT scan with definition which I had last Tues. I saw my Surgeon Paul Goldsmith the day before and, he also had some URGENT bloods taken from me. Since the CT scan that was so incredibly urgent I have been unable to chase up a follow up appointment. 1hr 12 mins on hold to the outpatient appointments line, 3 disconected calls to their secretaries, one who appears to have more vacation days than Judith Chalmers!! I eventually got through to an actual human 😱 in the CT department who was very understanding and, assured me that none of this was acceptable and, he would personally make sure the scan report was written up and, sent to my consultants ASAP and, would also speak with the secretaries regarding a follow up appointment. I live in hope. I have no idea why or, what is causing this other than my surgeon told me that the Achalasia /osophegetomy was the least of his concern that day but, to find out what is causing this abdominal distension. My consultants, GP are both equally as visibly shocked when I walk into the consultation room but, seem to have no idea at this moment. I feel so incredibly poorly and, at times feel an urge to just cry for no reason other than self pity. I have not taken omeprazole for over a year now due to the findings of possible problems associated with long term use. And, I was a huge long term use, from 1991-2016 when I made a choice to stop taking them as I felt they did not really relieve my acid reflux in any event. Despite the Achalasia, Anismus and, now Barrats oesophagus I am a healthy individual ha ha I don’t smoke, I would normally walk at least 4-5 miles daily with my dog. I follow a healthy diet not for weight maintenance or, anything strict but, because I think after the battle of getting diagnosed gave me a whole new outlook on food. I am a feeder, love to cook with a passion and, enjoy nothing more than feeding family and, friends around my table. But, I’ve veered of the subject a little now 😊 So yes, reasonably healthy but, I found myself attempting to squeeze myself into some outdoor clothes, like trying to push an inflated bouncy castle into a sandwich bag 🙁 I was driven to my GPS surgery, I caught the lift to the first floor and, was so out of breath. My GP was running behind and, as a result of sitting upright in the waiting room for an hour and, a half my abdomen had doubled in size and, I could barely get my words out. My GP looked horrified and, helpless, I actually felt sorry for him. So until I get an audience with the surgical team I am a complete puzzle. We discussed the omeprazole again as my voice has almost but, gone due to the stomach acid shredding the skin inside my mouth and, constantly in my throat with no respite he prescribed Eomeprazole which I havnt taken before so I can but try. I understand that this is a complete mystery but, if anybody can offer up some information or, advise me of any similar symptoms it would be very much appreciated. I am seriously considering finding another consultant/surgeon as I am doubting the level of care I have received but, worry that all the tests conducted prior to Christmas would have to be repeated all over again. I am in a place where I feel I have gone back in time and, battling to get answers all over again prior to diagnosis in 1989. I am doubting my own sanity once again and, it is an endless battle. The fact that I have had to give up my practice, enjoy anything remotely sociable or, even get out of my pyjamas is taking its toll on my mental well being at this moment and, I feel as though I am all but existing, sounds rather dramatic when I read it back to myself but, that is how I feel. Very defeated all over again and, I question whether we here in the UK have moved on much at all in this crazy world which is Achalasia. Thank you for allowing me this time to at least talk, it does help.
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