Achalasia and, hitting that brick wall

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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.

Take care 

Jan

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9 Replies

  • Posted

    Hi Nettie - Is it possible that you are so distended due to lack of bowel function?  You mentioned having a diagnosis of Anismus, but maybe you should get a 2nd opinion about that.  Please see the study at this link, especially the "discussion" section.  Hope this helps.  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC270052/

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    • Posted

      Hi Tasha, many thanks for your reply. I havnt had an opportunity to read the link you have kindly forwarded yet, many thanks. I do struggle and, managing my bowel is almost a full time job, it behaves like our Manchester weather, all 4 seasons in any one day is the easiest way of explaining how my bowel works. I make sure I eat a lot of soluble fibre in my diet normally when I am able to eat and, I take great care not to get constipated with docusate or, Movacol if I feel the need for that little extra push. I wish that was the answer but, unfortunately it isn’t as an X-ray and, examination shown that my bowel was pretty much empty. I’m aware with Anismus that you can very easily become impacted and, of course you can experience the overflow. My GP examined me yesterday and, checked for bowel sounds. There is no obstruction. Although I know your bowels need to be evacuated even when you are not eating so I drink a lot of water even more so now I’m unable to keep very little down without regurgitating. Until I get the CT results it is just a mystery at the moment. The last two weeks I have had difficulty in emptying my bladder, small drip drops with difficulty in getting a good flow. I have no symptoms of a UTI and, my urine came back normal, they told me it was because I’m so distended it’s putting pressure and, other organs are being pushed up hence the breathing difficulties. Thank you so much, take care
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  • Posted

    Hi I'm so sorry to hear what your going through. I pray that they find an answer for you ASAP. As for me ice been suffering from dyskensia of esophagus and esophageal spasms for over 4 years now and still no answer except pain meds. I too was on anti acids and channel blockers you name it. Still no real answer to my problems. I've been scoped so many times not to mention all the other scans and motility tests. Also you're right about having to redo all those tests over again with a new doctor. I've been that through 3 Drs and on my 3rd GI specialist so I know that process and its horrible. I'm still waiting on a call with biopsy results taken 2 and half months ago. My PCP says that means she found something and may need to run more tests so I'm hoping that's the case because I need answers. Again I hope you get good news soon # Blessings to you

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    • Posted

      Hi Chiffy, the waiting game is awful isn’t it. I can fully understand how you must feel having to have the tests done over and, over. It doesn’t ease your anxiety levels does it. This is why I’m apprehensive about seeking out another. Consultant. I’ve gone many years between surgeries for which i am grateful.  Compared to other sufferers who have had Hellers performed laparoscopically my two open surgeries done between 1989-1991 although old school and, aggressive I feel they have stood the test of time as my swallowing did not start to deteriorate until 2014 when I had the usual tests which showed there was no longer any function at all in my oesophagus. I have been relying on gravity until it has now almost become impossible as even water is just pooling and, sitting in my gullet. When I saw the surgeon just before Christmas he informed me that the time had come when an oesopegetomy was the only option available to me and, that was from my results back in 2014. I now know that between then and, now I also have Barrats oesophagus. I have not yet had the opportunity to discuss the entire results of the manametry swallow,  barium and, endoscopy as it was literally a case of down tools, scrap that for now. He was more concerned about the distension and, it became urgent to have the CT scan and, blood work done. I don’t even know what the results of the biopsies are until I get another appointment, which I pray I will receive one this week. I’ve just been trying to wrap my head around the oesopegetomy and, the possibility that they could have found pre cancerous  cells in the oesophagus because I know it’s in bad shape all round from what little information the registrars gave me following the tests. The level of care seems to breakdown in my case between the administrative personnel and, the surgeons. The surgeons are in a rush to get the tests completed then it’s down to me to make sure those results are not just left sitting there and, chasing my tail to make sure there is a follow up appointment. I have spent a large part of today doing that. Holding the line, being cut off, being put through to someone’s voicemail, it’s exhausting. I eventually got through to the CT department who informed me that the scan results had not yet been written up albeit it was highlighted PRIORITY URGENT!!  So you just have to let them know your still there and, not allow them to forget about you. My surgeon isn’t aware of the nightmare that you have to go through with appointment administration. He was livid when he saw me on the 5th March because they had cancelled 5 endoscopies since the 3rd January which should have been the final test prior to surgery but, then the problem with my distended abdomen arose, quite literally. I really hope that you can get the right help and, please let’s hope NO more tests. Wishing you all the best of luck, stay strong x
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    • Posted

      Hi Chiffy, I would just like to add that I think you’ve been very brave in deciding to seek out a second opinion and, find the right gastroenterologist. As we all know oh too well how difficult it is to navigate this disease, I probably understand more about it than some GPs and, some Consultants have no knowledge of it whatsoever which saddens me a great deal. So many people that suffer for years jumping through hoops. Left holding on to your sanity is appalling really, so it’s really very important that you see a surgeon that is more than familiar with Achalasia and, you have that confidence in as it’s inevitable that once you are diagnosed the relief is immense and, for me personally I know it most certainly made me very apprehensive towards any surgeon that wants to get their hands on me. Your reply has given me the incentive to question more now, just how specialised is my surgeon. I have a lot of questions for him when I see him next. We must make doubly sure that they are the right person for the job, I’ve been so poorly and, tired so thank you for that little extra push because if I have any doubts about his capabilities then it is much better to have the tests done all over again rather than jumping in too soon. As long as I know there is nothing sinister lurking it gives me a little more time to get more familiar with his work. Sadly the consultants who diagnosed me back in 1989 have since passed away, I had a fabulous Gastro Surgeon, Professor Bankervitz who was the leading man at the time and, published a lot of his work. As I’ve been very fortunate up until 2014 I have not had a gastroenterologist or, surgeon since. I was referred by my GP to The Manchester Royal Infirmary and, was seen by Alan Lee who I’m told is one of the good ones, I havnt seen him since as he’s doing a lot of research work so I’m told and, Mr Paul Goldsmith is on his team. I’ve only had the opportunity to see him twice now since before Christmas and, it’s been very rushed on both occasions. Thank you and, once again I think your being very brave, far better to proceed with caution. I wish you all the luck with your results, take care x
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    • Posted

      Thank you and your brave as well for staying in the fight. Its hard I know. I had no choice but to find different doctors because the ones I had did nothing or all they knew medically to do. Now I'm with a hospital in San Francisco Ca which is 2hrs from where I live its called UCSF its supposed to be one of the best so I'm sure hoping they find a solution. All the best to you

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    • Posted

      You too Chiffy, it sounds promising dosnt it. And, if you have been advised that it is one of the best that’s great and, hopefully they will get to the bottom of it quickly for you. I wish you all the very best Chiffy and, hope everything goes smoothly for you from now on. A two hour drive is worth it if your in good hands, take care x
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    • Posted

      Hi Chiffy31, I’ve been hanging around here, in hopes of learning anything that will help me get my Achalasia surgery back on track. I’ve been through a lot of what Nettie has and it’s going on 1 & 1/2 years I’ve waited for the surgery I was told I needed while in my third hospital stay. I’ve jumped through every hoop, had every diagnostic endoscopy, some of them several times. I’ve had the barium, the manometry, etc etc and had two specialists standing at the foot of my hospital bed giving me the diagnosis of Achalasia. A diagnosis that I actually welcomed since it had been thought to be so many different things until all th testing. 

      But, because of a circus of wrong referrals, unfortunate consultations with the surgeon which turned into a “I haven’t seen your films yet but I don’t think you have Achalasia, you have GERD” has brought my progress to a stop. However my GP told me he’d like to refer me to a place is San Francisco that specializes in diseases of the esophagus and another of his patients had  just returned, very pleased with her treatment and care. 

      So he’s referred me, it’s over 12 hours away but at this point he, and absolutely I, feel the circus I’ve been in has caused me further problems with an already weakened immune system due to systemic Lupus. I can’t swallow for the love of God! The fluids I can get to go down aren’t enough to keep my kidneys functioning as they must, since Lupus is horrible for kidney damage. 

      I’ve gone silent these last 6 months, mostly from the treatment my husband and I received from a surgeon and decision to do his own diagnosis. I have mad, huge respect for doctors. But I’m shaken and now angry. 

      I’m preparing for the trip to San Francisco, with hope. Seeing that you’ve also heard of them is hopeful. Good luck to both Nettie and you. It’s bad enough having this, add on the frustration of a fractured system or a mixed up clinic and you do begin to doubt yourself, that is until you look in the mirror and see an 88 lb. person looking back at you saying “you better get this straightened out. Even if it’s just you, your husband and your GP against the world. Fight, ask questions as call foul on the egos. This is my LIFE.”

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