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Diagnosis Surgery and atypical symptoms - Achalasia

Posted , 5 users are following.

abigail66654
abigail66654

I would really like it if someone could tell me if they have my atypical symptoms for this disease. I have not wasted away despite intense difficulty swallowing if anything my metabolism has slowed to such a point that despite exercise and small frequent meals I can’t seem to lose weight. I don’t put any on and I am tired most of the time but I don’t lose weight either. I have posted here before regarding the whole process if diagnosis etc. When they did the POEM what they found was that I had Type 2 rather than type 1 my esophagus was severely distended they had to go 9 cm and then they loosened the sphincter to allow the food to empty into the stomach expect that isn’t what is happening. I has this done April 15th and at first it was pretty good, then the acid reflux started….i had an allergic reaction to the acid reducer, they switched it, I started having difficulty swallowing again they put me back on a soft diet, they said that I basically have an esophageal funnel and that I am not experiencing acid reflux so much as fermenting food at the bottom of the esophagus therefore that’s why I am to eat small portions six times per day of soft food. Frankly it isn’t working for me. I have put on 15 pounds since the surgery and as I said unlike every other patient out there I never went through the wasting thing if anything as this disease has progressed I have had more and more trouble losing weight. Hasd anyone else out here had any opf these problems. I am at my wits end……

0 likes, 7 replies

7 Replies

  • shrutin
    shrutin abigail66654

    Posted

    Hey Abigail, I am sorry to see that you are suffering dispite getting POEM done. I myself have had POEM procedure done on me about a month back. Thankfully so far, my body has responded well to the procedure. I'd like to share with you though that just like you I did not loose a lot of weight prior to my surgery. I suffered from the symptoms for almost a year, still I lost 2-3 Kgs at max. Since the procedure, I have regained that lost weight. One change that I have introduced in my life is that I always eat my meals while straight upright. Prior to surgery, I'd always eat while standing. Now, I can sit down and eat but I still make sure my back is straight so that the gravity can help with the passge of food into the stomach. Please try doing this. Hopefully, you'll observe a change. A few other changes that I have inculcated are - 1. I do not eat dry/chewy foods like bread ot at least limit the intake. 2. I stop eating at about 9 pm and do not eat for next 2-3 hours and try to be in a sitting position throughout that time. Walking a few minutes (100-200 steps) after a meal too helps. I hope you feel better. Take care.

  • JoyAsh
    JoyAsh abigail66654

    Posted

    I've never gained weight, but I never really lost weight either even when I was at my worst. I still have trouble swallowing, choke on a wide variety of foods/liquids and aspirate from time to time. I feel for ya though because no two people are affected the same by this crazy disorder. Since my surgery 4yrs ago, I feel I'm a tad better but still have a long way to go. Praying you find some answers soon!

  • AlanJM
    AlanJM abigail66654

    Posted

    In relation to your fatigue I think it might be worth checking your vitamin and mineral levels, as you may not be absorbing these sufficiently.   You may have to find a method other than swallowing pills; otherwise they may simply get stuck in your oesophagus.   A pharamcist might help.

    It may be that when you swallow food it gathers and congeals and adds weight to your oesophagus, so that it sags out and below the sphincter into your stomach.   So the priority is not to add to this load until your earlier mouthful has passed into your stomach - if possible.   The food may well become stagnant if it remains there, and that can be very unpleasant indeed.   You might feasibly be able to make a slight difference with your posture so that gravity helps as much as possible.

    ​There may come a time when the balance of your quality of life is such that it is worth considering the surgical removal of your oesophagus.   This operation is a major undertaking, but I know many people who have had it done who have a good quality of life, notwithstanding some digestion problems and the need to eat little and often (something you will be familiar with).   There are patient support groups of the Oesophageal Patients Association that you could contact if you look up their website.   90% of their members had surgery because of cancer, but achalasia accounts for a proportion of the remaining 10%.

    • abigail66654
      abigail66654 AlanJM

      Posted

      I actually am sit up and eat or stand up and eat person. I have no choice but to have very good posture when standing and sitting because my top five vertebrae are fused smile I have been told that before they would even consider re-sectioning the esophagus they would do a second POEM procedure. For what it is worth I am in the US.  I suspect that the what you suggest with food (So the priority is not to add to this load until your earlier mouthful has passed into your stomach - if possible.   The food may well become stagnant if it remains there, and that can be very unpleasant indeed.) is exactly what is happening the problem is no matter what posture I take or what I consume that is the net result for me.  16 ounces of water, coffee, tea or any liquid results in the same feeling of incredible discomfort bloating and what can only be described as the sound of something trying to go down a drain, it is so loud that people sitting across a table from me can hear it. ( it is also painful) When we go out  I don’t like to eat or drink in public because it is embarrassing. I am not in a position to eat 4 ounces of food or drink every hour or two hours or whatever I am a consultant and can’t stop my work all the time to do this. There are days I wish I had never had the surgery or found out what was wrong with me. I have contacted my surgeon whom I am to follow up with in August to try and understand my next steps but I feel hopeless. Frankly just having someone to discuss it with helps… I am not typically a whiny person and I hate feeling like this and having no answers to this constant discomfort….

    • AlanJM
      AlanJM abigail66654

      Posted

      It is indeed an enormous quality of life problem and very dispiriting.  Some people massage their chest area and find a bit of comfort when this helps the food to go down.   I suspect that it would be even worse had you not had the surgery, and I suspect that all you can do is to try and stop things getting worse, and to try and time your eating around work.   Being relaxed whilst eating does normally make a difference, even though this is easier said than done.   A certain level of stress and tension at work in a busy job probably exacerbates things as well.  

      ​It will be helpful, I am sure, to discuss things with your surgeon.   They are usually ahead of the game in knowing how you will be progressing.

  • ramgobind
    ramgobind abigail66654

    Posted

    I have similar problem and  had the myotomy in 2008.Now again problem started  in April 2016. Doctors confirmed failure of mytomy operation by conducting  UGI Endoscopy and barium swallow test. Doctors recommended for POEM or repeat myotomy.However one Gastroenterologist recommended medicine ""calcigard 10mg and Beson tablet before meals, With this medicine I am able to swallow food and gained weight. I am taking this medicine since last two months. You can also share this exprience with  Gastroenterologist and get advice.If any body has exprience with this medicine please share

    • abigail66654
      abigail66654 ramgobind

      Posted

      Nifedipiner is the name of Calciguard in the US. I had it before my POEM surgery and ran into a side effect that was interesting. My blood pressure tends to run low, I took this 30 minutes before a meal and my husband had to catch me when i almost hit the floor from the drop in my blood pressure. The only way i can take this it is if i swallow it with a large cup of coffee and then although i feel lightheaded i dont pass out. I think i am probabaly back into a surgery re do....We will see. 
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