Achalasia and, Barrats oesophagus

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Hi, I’ve suffered with Achalasia since 1984 although I wasn’t diagnosed until 1989. I had open abdominal surgery in 89 but, difficulty in swallowing started to worsen again in 1991. I had a dilatation procedure but, sadly that was unsuccessful. I was then put under the care of a professor who was more familiar with the desease and, I required a second surgery, more aggressive approach to basically anialate the sphincter muscle. Again this was open surgery, this time literally cut in half, Hellers procedure I believe it’s called. Now it can be done laparoscopically.  So I’ve basically had reflux for 28 years but, 4 years ago my swallowing began to worsen again and, symptoms are much worse.  I had the usual barium swallow, the ph swallow monitoring and, endoscopy and, the results were that my oesophagus had no function whatsoever and, was beginning to look baggy. The consultant told me that I was in a very difficult situation as I’d had two previous open surgeries and, that further surgery would be very difficult. I was basically a knightmare. My symptoms have worsened considerably to the point where I’m choking in my sleep and, even fluid is a difficult one to manoeuvre.  I’ve recently had the barium and, Ph study just before Christmas and, I will be having another endoscopy on 11th Jan. The two results I’ve had back show that my oesophagus is in bad shape and, a lot of narrowing, I havnt even got gravity on my side any longer as everything is just sitting in my gullet. The surgeon spoke to me about an oesophagetomy on the basis of my results from 3 years ago.  I’m so worried, how bad can this be? The previous surgery’s  have intended to destroy the sphincter in order to stop my oesophagus from narrowing again.  I saw the barium and, even the radiographer said it was radically worse since the last test. Has anybody been through similar situation or, can advise on life after the oesophagus has been replaced 

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  • Posted

    I know lots of people who have had an oesophagectomy, including some because they reached the end of the road for achalasia treatments.   The best source of advice and support is through the Oesophageal Patients Association and their website.   The OPA was started by David Kirby over 40 years ago, and he is still alive and well.    90% of the cases are cancer-related but people can lead very active lives after the surgery notwithstanding that it is a tough procedure to go through.   A year or so ago a young lady came to our Achalasia support group who had had this operation around 10 days beforehand to tell us about her experience, and was doing very well.

    ​There are digestive complications because the digestion system is shorter, and food can pass through much more quickly than normal, and there can sometimes be some issues with potential insulin imbalances from time to time, but it may well be that you have enough complications at the moment for this to be a positive improvement?

    ​Unfortunately, there is no real cure for achalasia as such, and not much consolation in the fact that your previous surgery has given you some years of benefit before the recent deterioration.

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    • Posted

      Hi , thank you for taking the time to reply. I have read information regarding what they call dumping but, my bowels have been very challenging for a few years now and, when I had the Ph/swallow test they told me that it can affect the bowel and, major bloating. It’s great to hear that the young lady you mentioned is doing very well after 10 days, well done to her 😊 I’m just worried that it will mean them cracking my chest for the 3rd time. I am a non smoker but, I also suffer with fibromyalgia and, I’m 51 now. The results of the endoscopy are really concerning me at the moment for obvious reasons. Thanks again, take care

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    • Posted

      I have to say that I very much appreciate this new discussion, Nettie & Alan.  I have had the Heller Myotomy and Fundoplication surgery [14 months ago], and this week had my second balloon-dilation [first one was 9 months ago].  At the moment, it doesn't feel like the dilation has worked.  My esophagus is paralyzed, and the esophageal sphincter muscle is not working very well .... I have very poor 'clearance.'  The surgeon will be ordering another Manometry test [first one was done 4 months before surgery], and possibly another dilation, with a larger balloon.  I guess I am sort of rambling here...what I want to say, is that this is the first time I've read a discussion about oesophagectomy for someone with Achalasia and not cancer.  This information is invaluable to me.  I also would appreciate discussion with you, Nettie, as to how things progress.

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    • Posted

      Hi Donna, I just wanted to say that my oesophagus has taken a good few hits over the years and, there is a lot of scarring. They had difficulty getting the probe through as my oesophagus was all over the place. The fundiplication that I don’t know very much about, would I be right in thinking that it’s a banding procedure? and, can they adjust it for you laprascopically. I’ll keep my fingers crossed for the dilatation and, hope just that bit of extra stretch does the job for you. Please let me know how you get on 😊

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  • Posted

    Hi,

    I am sure you will get lots of advice here, hopefully from someone with a similar experience.... I havent had surgery (yet) but have suffered from what has felt like complete loss of function. To help gravity I adopted a manoeuvre that involves lifting my arms, breathing in slightly, holding my breath, then swallowing with a straight back allowing my arms and diaphragm to relax down. With practice it may help; but is not a cure or firm fix. It is important to be gentle as to not damage anything, only gently help move things along; and should be discussed with a DR.... Also, obviously sleeping up right will help with aspiration - you will get lots of advice here on that. Plus there are plenty of A sufferers that purposely regurgitate before bed; but that has risks, and again should be discussed with a DR. I also find that Calcium Channel Blockers (Tildiem) help me swallow / relax (Needs to be prescribed).. Sorry, probably not very helpful and likely last resorts for you, but information that may help in some way..... Good luck with surgical advice! Lots of HM and POEM experience on here to draw from...

    Healthy karma and warmest regards,

    Neil

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    • Posted

      Hi, thanks for your advice. It’s just great talking to somebody that has even heard of this desease. During a hospital stay for something else a registrar actually asked me how long I’d been an alcoholic for!!! After I’d convinced him that I was most definitely not an alcoholic  I had to tell him what Achalasia was. I’m a veteran at this and, your absolutely right with finding your little manoeuvres to get food past the danger zone, it comes naturally to me now . I will ask my GP about the calcium blockers, I havnt heard of those before. Thank you, take care 
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    • Posted

      Hi again, the CCBs took a week or two to work on me. I actually only take 1 x 60mg tablet in the morn each day. Knowing Achalasia things can change for better or worse over night, so fingers crossed for a positive shift for you!!!! smile

      N

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    • Posted

      Hi, all these years and, not once have the consultants or, my GP mentioned them. I was taking Omeprazole for many years, too long according to the recent dangers of taking them long term. I stopped taking them about 18 months ago. But, as you’ll know there is nothing to put out that fire 🔥 when it really starts.  After my Ph test they asked me why I hadn’t listed any symptoms, I didn’t feel any reflux within that 24hr period, typical I thought. They told me that looking at the readings I was a silent refluxer. Will definitely be in touch with my GP on Monday, thanks again 😊

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  • Posted

    I have replied to you on Alan's initial response.

     

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    • Posted

      Hi Donna, I have had Achalasia since 1986 when a lot of Drs,  consultants didn’t even know what it was or, even heard of it. My first surgery was a dogs dinner to be really honest, cardio myatomy. The surgeon was a great man and, I will never forget him as I’d been put through the emotional ringer being diagnosed with all kinds of illness, anorexia being one but, I could talk about that till the sun comes up. My oesophagus narrowed again and, I was regurging,  choking and, often food or, drink would come down my nose as is happening again now. My first surgeon basically said he was now out of his depth and, referred me to Professor Bancervits at Hope Hospital and, he had done a lot of research into Achalasia and, he performed the open Hellers and, destroyed the sphincter muscle to stop my oesophagus from narrowing again. I did have a dilation in between but, it made no difference whatsoever. After the second surgery I started to suffer with reflux/GURD and, I’ve had it that long I’ve learnt to cope with it. Unfortunately in 2013 my swallowing began to get worse again and, I had the barium swallow, manametry swallow test and, endoscopy  which showed a narrowing and, very little function left. The Surgeon explained that it would be very difficult to correct it again especially after two previous open ops because of course they have come a long way and, are now able to these procedures laparoscopically which I was told could not be an option because of scarring from previous surgery.  We discussed options if it got to the point where it was becoming impossible and, I managed for two and, a half years literally just managing it. But, I’ve reached the point again where it is affecting my quality of life and, it has affected my bowels as well this time around. I had another barium and, manametry swallow just before Christmas and, I was booked in for endoscopy last Sunday but, I had to cancel as I’d come down with a nasty cold virus, just my luck.  I have another scheduled for 11th February. There is no function whatsoever in my oesophagus now, food, water is just staying in my gullet. They tested me standing up and, even gravity is not helping. I’ve picked up a few swallowing manoeuvres over the years that I think becomes natural after so long but, I’m really struggling now. My osopheagus is described as baggy and, not where it should be so it’s holding my whole digestive system up. I’m refluxing during sleep and, can wake up choking on my own saliva. The consultant who I’m now under explained that an oesophagetomy was the way forward after looking at my results from 2013 but, obviously needed them repeated and, the results are much worse. I’m very anxious about the results of the endoscopy as I’m aware that there is a higher risk of cancer in my case and, they have gone from 0-60 in a matter of weeks which scares me 😱 a little, well a lot of I’m honest. Just waiting on the 11th Feb now, if it was just a case of a little difficulty I wouldn’t consider it an option but, when it starts to interfere with your other digestive bits and, bobs and, improve my lifestyle then it will be worth it I’m sure, no more looking for the bathroom before I sit down in a restaurant, no embarrassing moments. I know there will be some issues I’m sure but, it has to be better I hope.

      Take care, nice to talk to others

      Janet

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  • Posted

    Thank you for your response.  They figure I've had Achalasia for 'decades' and when the Manometry test was done, it gave the 100% definitive diagnosis, but it was end-stage for my esophagus.  It, like yours, is paralyzed...no movement, etc.  Appreciate all that you have shared.

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