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Achalasia

Posted , 4 users are following.

Nettie_Noo_Noo
Nettie_Noo_Noo

Hi, this is the first time I have heard other people describe their Achalasia as 1st, 2nd, 3rd and, end stage. I was diagnosed 35 years ago and, I had no idea of the stages. Reading your discussions relating to spasms I am now wondering whether I have had them for all these years, intense chest pain, that can radiate down my arms. I’ve always put it down to acid reflux pain, i get the pain in my teeth as well. I can only assume that I am end stage as the surgeon has said I will need an oesophegetomy. I have had two of the tests and, the last one another endoscopy on 11th Feb. I take no medication at all apart from Gaviscon which acts more as a placebo as most sufferers will no nothing gets rid of that pain. Just burns itself out. At the present time I literally look 9 months pregnant, tummy is so distended it’s affecting my breathing, my ribs are literally cutting me in half when I’m sat upright. So very uncomfortable, my lips are literally on fire from the acid in my mouth. Does anybody else bloat. I’m learning something new everyday on this site, I know I’ve not been flying solo for all these years and, I definitely need a good chat with my gastroenterologist. I have never been offered any of the medications that other people are talking about ??? I was prescribed omeprazole which was supposed to be the wonder drug back in 1990 but, of course as many of you may known they are now known to cause bowel problems and, warn not to take long term. I had been taking them for 34 yrs but, because of the problem that has Now travelled to my bowel I took it upon myself to stop taking them. They didn’t work for the reflux or, spasms in any event I was just living in hope. And, Joanne it is a very isolating condition and, plays havoc with your social life. It is my parters birthday tomorrow and, we had planned on having a bit of dinner in our favourite restaurant today and, we didn’t go because I am so unwell and, have spent 4 days in pyjama bottoms because I can’t fit into my clothes due to the abdominal swelling. I feel so guilty all of the time I’m either regurgitating, feeling constantly sick with little or, no appetite. Take care everyone 

1 like, 8 replies

8 Replies

  • donna15310
    donna15310 Nettie_Noo_Noo

    Posted

    There are 3 'types' of Achalasia.  I am type '1' which means my esophagus is paralyzed, no peristalsis [sp] at all.  The other two types have some movement in the esophagus.  There is a patient's guide that Alan, from OPA can direct you to, that will explain  this fuller, and this guide is a wealth of information. 

    • Nettie_Noo_Noo
      Nettie_Noo_Noo donna15310

      Posted

      Hi Donna, thank you for explaining this as nobody has spoken to me in terms of stage 1 or, 2. I will speak to my consultant for sure when I see him on 11th Feb but, I’ll definitely take a look at Alan’s guide. As I’ve mentioned to you before there was no function in mine when they ran tests in 2014 and, I have just coasted with it up till 2 months ago and, I explained to my GP how I was struggling again. I just feel lousy, no sleep for 3 nights I’m that uncomfortable. Anyway I’m ranting now ha ha, I havnt spoken to anybody else before who suffers with Achalasia. When I’ve been in hospital in the past a nd, they ask have you had any previous surgery or, ongoing medical problems a large majority of the medical profession have to ask me what it is? How do you spell it. And, the consultants who do know what it is look at my scars in horror because of course a lot has changed. Many thanks for the advice 😊

    • donna15310
      donna15310 Nettie_Noo_Noo

      Posted

      I was diagnosed in 2016, had Heller Myotomy & Fundoplication surgery, then 3 months later a balloon-dilation.  The specialists feel that I've had Achalasia for decades.  Anyway, do look at the Patient's Guide, and print a copy of it.  I have done that and put in a binder, and it has been a wonderful resource.  Since Ach is so rare, there are no books on it.  And, as one person said to me, if a doctor even has one case in their whole career, that is something.  I've been blessed with a wonderful surgeon, only one in the Province I live in [Canada], a GI who has Ach patients and an amazing GP.  It is a difficult journey, that we take, knowing there is no 'fix' nor 'cure,' but different treatments, to enable us to eat a little better.  Or as my surgeon said, 'to give you a better quality of life, in terms of eating.'  Having said all that, I just had my second balloon-dilation this week [9 months after the first one].  So, it is a stay-tuned for me, for now.

    • Nettie_Noo_Noo
      Nettie_Noo_Noo donna15310

      Posted

      I really hope your second dilatation has been a success Donna, my fingers and, toes are crossed for you. I live in the UK and, I have not come across anybody else with the disease and, it can be a lonely place sometimes.  I’m really curious  know how long it is taking for Achalasia patients to be diagnosed now. I went through hell and, back prior to my diagnosis in 1989. Getting a surgeon that you have every faith in is paramount and, I’m very cautious now. Some just seem eager to get their hands on me, a bit of a challenge if you will. Here in the UK there definitely needs to be more awareness and, understanding for people with Achalasia. Medical investigation seems to go down the route of eating disorders, physicosimatic symptoms. Everything else first before somebody gets that lightbulb moment. I’ve found it still incredibly difficult to get to the right people even with a diagnosis and, past history. Maybe I’ve just been unlucky but, I feel there ought to be more knowledge out there for sufferers and, how this illness affects a persons quality of life. I had a terrible experience when I had the endoscopy in 2014, the registrar that was performing the examination spoke to me prior going in and, the usual questions were asked. Then right out of nowhere he asked me had I started my chemotherapy yet???? Myself and, my partner were stunned, I said no, why would I need  chemotherapy?  And, of course we said there must be a huge misunderstanding, my medical notes were in his hands, he confirmed my name, date of birth etc and, I just drained. He excused himself for a moment whilst he went to see exactly what was going on, thankfully it was a huge administrative error and, how or, why my notes contained another persons test results. It was horrendous and, my heart just went out to whoever these results belonged to. I felt relieved and, saddened at the same time. Because of this experience I am even more anxious about the endoscopy on the 11the February especially as they are preparing me for an oesophegetomy.  I am filled with dread to be honest and, trying very hard not to allow my mind to run away with itself. Either way I am told that there is nothing else to be done surgically now apart from the oesophegetomy. Fortunately I have been able to maintain my weight but, I am grazing on food all the time as my stomach dosnt feel full or, satisfied. I just can’t stop snacking, I only eat small portions in any event but, nothing seems to fill me up at the moment. Oh I’m so sorry Donna I’m prattling away here ha ha. Fingers crossed for your dilatation 
    • donna15310
      donna15310 Nettie_Noo_Noo

      Posted

      You are not 'prattling,' you are sharing your experiences, which I strongly believe helps others who are frustrated or feel that they are 'alone' in this journey.  When I had the dilation last week, two of us were taken into the Day Surgery ward at the same time.  The nurse referred to me as the 'Colonoscopy,' which I quickly said I was not....and so made sure that the chart placed on the bed table had 'my' requisition on it and not the other woman's!  I too, like yourself, eat very small portions, child-like, and have to 'graze' all day, which I find difficult, as most everything sits for a long while.  There are others in the UK with Achalasia, and they will appear on this Forum.  I have found Alan, with OPA, to be a source of support and information.  So, don't ever think you are 'prattling' as the responses you receive, may actually benefit myself and others.

  • Nettie_Noo_Noo
    Nettie_Noo_Noo

    Posted

    Well I’ve just had a very brief quick look at the OPA website and, I saw a name that lept off the page. Peter Coverdale, I doubt we are related but, we share the same surname. Thank you again Donna and, I will have a good read .
  • Pasha333
    Pasha333 Nettie_Noo_Noo

    Posted

    Hi Nettie Noo Noo

    I am not the sufferer, but I am the partner of the sufferer. Whilst we too have heard it classified as stage 1, 2 etc. My partner was never given any specific classification other than his esophagus was totally paralyzed. This was diagnosed following manometry testing. However, on hearing others definitions, it is clear that he has stage 1. 

    We too are in the UK. Diagnosis did take a while, around three years, during which time he endured heart tests, CT scans, liver and pancreatic function tests, countless X Rays and blood tests and finally landed in a Gerontologists chair and was finally sent for monometry testing. By this time his weight was at rock bottom and he was living on protein shakes.

    He had a Heller's Myotomy three years ago and this was followed by Botox injections twice which finally addressed further tightening of the sphincter. (We were fortunate to find a private surgeon who carried superb credentials and worked for the NHS also, and to our delight, was the one who did the surgery....) To date my partner is gravity fed, eats soft foods, little and often and has managed to maintain a decent, but lower than before, weight. 

    He has been warned that one day his myotomy may fail and this will be the end of the honeymoon period, but until then... 

    I have heard of the bowel being affected in areas other than the stomach I have to confess. Effectively I was led to believe that any point along the full length of the bowel may be affected. Although for my partner, it is just the cardiac sphincter. You are absolutely right, it is time to speak frankly to your GI and see what he suggests. 

    I wish you all the best.          

    • Nettie_Noo_Noo
      Nettie_Noo_Noo Pasha333

      Posted

      Hi thank you for your post. I have been asking consultants for the past 5 years if my bowel problems are connected to the Achalasia as I just knew and, felt as if it was. My digestive system is all out of sync, I can tell you where my food is stuck and, hear it on it’s rounds.  As a long term sufferer I know how my body ticks but, they diagnosed me with IBS, one gastro consultant said that the swelling in my abdomen was due to my age, I could have thumped him ha ha. It isn’t just a little bit of a fat day ha ha I really look as though I’m about to give birth. They ran some more tests and, I was diagnosed with anismus as the sphincter muscle in my bowel wasn’t relaxing and, basically something I had to live with and, manage. But, managing it has been very very difficult as I can not leave the house some days due to bowel incontinence which affects my quality of life. If and, when my food gets to my bowel I can not evacuate my bowel properly because of the sphincter muscle. Because of all this I now have a prolapse and, the pain that comes, twisting and, severe burning is awful and, can last for days and, days. Just before I start to swell up like a balloon I have full on reflux that does not go for anything, my insides feel red raw. It was the lady who did the monometry test that told me it does affect the bowel, so I need a good chat with my consultant. I’ve felt as though I’ve been going crazy loco and, very isolated as well. If it’s not one end, it’s the other and, the bowel issues have caused me a lot of distress and, embarrassment. I’m now under the care of Professor Gainsborough at The Manchester Royal Infirmary and, that was from being in the right place at the right time. As I had gone in as a day patient to have a small abscess  removed. Whilst under the anaesthetic I had an allergic reaction and, I’m told the aneathetist had a bit of a job on his hands. I went into hyperthermic shock and, I had also aspirated. When It had all settled down the consultant came to talk to me and, asked me questions regarding the Achalasia, he could not believe that nothing had been done in 3 years and, he made a few calls and, I was seen by one of the surgeons on Professer Gainsboroughs team and, it’s all happening very quickly now all thanks to a general surgeon who went the extra mile. I had two open surgeries, Hellers and, myotomy so they could not do anything by way of keyhole. Mine stood the test of time for 30years however, I have suffered with GERD  ever since, my swallowing back at its worst. I wish you all the very best, take care 😊

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