Need some help.....

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I fam wondering if anyone in the Achalasia group have experienced the following.  Sometime ago, I someone in this Forum posted the possibility of food 'rotting' in the esophagus, when it gets stuck there, or just 'sits.'  So, here is what I would like to know.  When this food, which has sat far too long in the esophagus, or as my surgeon refers to mine 'the second stomach,' when this food finally moves down into the stomach and through the bowel, is this food sort-of hardened because of sitting?  And, as it finally moves, do you experience a lot of gas?  I am 3 weeks away from surgery, and the only things working for me now are protein shakes, a liquid supplement, water, and banana bread [of all things], and puddings.  Sometimes, even the protein shake will sit for hours.  When stuff finally begins to move down, I am almost nauseated, and become very gassy...it is horrible, and I really don't feel that well.  I know that I should be eating more, but can't.  Its when I go to bed at night, and recline on the wedge-pillow, that finally, stuff  moves down, and with a lot of noise.  Sounds like a 'hungry' stomach, but it isn't.  More like sludge moving down a drain!  So, anyone else experience 'any' of this??????  Again, I am type 1, and my esophagus is paralyzed.  I would appreciate some 'sharing' from the group.

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  • Posted

    HI Donna.

    I have not come on the Forum for ages as my husband is post op and frankly life has been good for him for nearly 18 months now. But I saw your plea pop up and realised that his positive situation now was probably the light at the tunnel others needed to hear about.

     

    Yes, in short. He had several endoscopies and each one reported food left 'fermenting' in the pouch. Not pleasant. He would have a meal in the evening and the following lunch time could 'cough up' residue from the previous nights meal when the lunch had 'gone down'! We realised that food was becoming trapped in the pouch and causing him distress, discomfort and as you say, it is pretty nauseating when it does go down. He (even today sometimes) will simply sit during a meal and just wait. He tells me that he is waiting for it to 'Go down' and without warning, the band of muscle simply springs open and the contents of the pouch are emptied into his stomach. It is both audible and he feels it. He then often suffered pain, gas and sickness.  In fact he was frequently sick

     

    Like you, his oesophagus is paralysed and like you, he was surviving on protein shakes and water before his surgery.  However, it is almost two years since his surgery now and after two more counts of Botox to loosen the sphincter still further, he now eats normally. In fact I believe he has become Italian! He eats pasta, and more pasta… But he gets on well with it.

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    • Posted

      Thank you Carol for replying.  I am having great trouble posting on this Forum now, so if the Moderator is checking, could you please check into this, thanks.  Anyway, Carol, I haven't had a problem with throwing up, and that is a blessing of some sort.  Even with protein shakes, they 'rumble' through my system, which I should be grateful for, as it means that the shakes are 'going       

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    • Posted

      Things were very noisy. Hubby said, things are coming to a head by the sounds of it. And to hang on in there, you are almost there…

      He has adapted to the limitations of the condition after surgery and you will get into a routine. He tends to allow the first coffee of a morning go ‘around the bend’ and then he is off.

      As I say, two years post op and he is back to good health  

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    • Posted

      Yes, that I know!  Its just a little over 2 weeks to go, and although the thought of surgery does make on a little nervous, I'm looking forward to that day.  How is eating 'different' for your husband, if one wasto compare it to 'normal eating?  Does your husband still have restrictions?

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    • Posted

      Ok, hubby’s name is Andy. Whilst he never did come on this Forum, I did and found lots of ideas and support. I was pretty lost too at the time.

      His achalasia is as follows:

      Oesophagus paralysed – confirmed by manometry test

      Pouch formed at the top of the stomach, just above the cardiac sphincter, due to food forcing it outward. Sphincter itself became tighter and tighter until it was practically shut and he was suffering from malnutrition. He was constantly in pain. It hurt if he ate, it hurt if he didn’t.

      Heller’s Myotomy and partial fundoplication on 19th Dec 2014.

      Immediately post op, he found it difficult to eat food and the Forum advised he only attempts ‘soft’ foods at this stage. Despite the foods the hospital gave him, he tried to do this. If he ate harder foods, it would give him pain. He had two further rounds of Botox because the sphincter still often went into spasm. With good effect.

      It is essential to understand that everyone is different and what works for him, may not suit others. Your experience will be unique and whilst we may have ideas and tips, you will find your own way around your body

      These days….

      Yes, there are still some restrictions. You are and will always be gravity fed. He says he still has four to five mouthfuls and then waits for it to ‘Go down’. A drink helps. You can actually feel the food shift and drop into your stomach and he tells me it simply is never the same as you were before the Achalasia started. But it is manageable and life will carry on.

      These days he tends to eat softer foods that are slippery and moist. Pasta and Italian meals fit the bill perfectly. However, the days of him going to an All you can eat Buffett are over. He tends to eat a small breakfast, typically Weetabix with additional ground nuts and seeds (to ensure his diet is as nutritious as possible) and then takes hummus with a boiled egg for a snack at work.

      For lunch he has homemade soups, sometimes with bread dipped in or macaroni cheese etc and then has a proper dinner. He generally eats lasagne, or bolognaise at this time. However, he can manage fresh pizza, sausage and mash, soft burgers, or curry etc. He does have a Carvery, most weeks and we are still able to eat out. There is always a drink to hand however…..

      He says, he no longer has the sensation of being full during the meal, but if he overeats, he is in pain and discomfort. You learn what to eat.

      He says Don’t panic…. Concentrate on what you can eat, not what you can’t eat. 

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    • Posted

      THANK YOU!!!  I don't think you know how much you have helped me...finally, someone has shared what it is like post-surgery; what to expect.  I'm in Canada, not sure where you are.  The brief post-op info that I have been given says I will be eating normally in 5 days....there is something wrong with that picture!  My whole being says, 'as if!'  again thank you, thank you...

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    • Posted

      Oh bless you! So glad to have helped in any way x

      We are in England. Norfolk to be precise!

       

      It is my honest opinion that only someone who has experienced this rare, often frightening and confusing condition can give you the answers. How fortunate am I to not fully understand what you two are going through. However, I have sat many, many hours trying to support my husband with this.

       

      Definitely start small and light meals at first. Even soups will fill you up. If you are having a fundoplication it stands to reason that you may never be able to eat a large meal again..... after all, they use the top of the stomach to form a new sphincter!     

      I wish you all the very, very best. Send us a note whenever you need to, it notifies my e mail address. Andy just said, come back to us, stay in touch and let us know how you get on. x

       

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    • Posted

      You two are so sweet.  I'm having trouble posting; I've tried 3 times now, and each time, it froze my laptop.  I should've known you were UK [sausages/mash ie bangers/mash].  Thank you for your support, I so much appreciate this

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    • Posted

      So, maybe I can do part 2....it is hard to know what to  eat.  Right now it is 2 protein shakes a day with either banana or peaches and spinach.  I also drink 2 meal-replacements a day.  I also eat puddings, they go down nice and smooth/comforting at tmes, as well a jello.  Do you think I need to increase the shakes, to 3 a day? 
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    • Posted

      Okay, so for about the tenth time, I'm trying to post again!  My system is 'rumbling' and it is a really 'icky' sensation.  Did I tell you that I m a Pastor?  It has become more difficult with each S.unday, The sip of water  take before preaching,often just sits there, and I am no longer able to take a Communion wafer.  Two more Sundays, then I will be off for almost a month

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    • Posted

      It does sound as though you have reached a crisis point. Surgery isn't going to come too soon for you! An ex nurse, I was horrified by the limited amount my husband was existing on before surgery. Yes, yes, drink as many shakes as you can get down! Whilst not perfect, if they are the ones Andy was given (he had Fresubin), they were around 300 calories each. The normal woman needs around 2500 calories to maintain her weight.

      Like you, Andy ate ground sweet rice, milk junkets, egg puddings and whatever else I could think of. We did get creative with a liquidiser/food processor and even processed his Carvery in the end as I was concerned about his calorie/nutritional intake. His journey lasted almost two years and he was so thin and lifeless by the surgery. He lost so much weight. In the final two weeks prior to surgery, he was barely able to swallow his own saliva.

      Andy’s Doctor prescribed Metoclopramide for his sickness. And this helped a lot; it even calmed the noises a little. He was at least able to function through the days. He is a stoic man, and somehow, and I shall never know how, managed to continue working right up to the surgery.

      His advice is for now and post-surgery. When you can eat and things appear to be going down…. Eat. There are times to can’t/won’t be able to so fill up as and when you can. x

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    • Posted

      And I forgot to mention, something many question here. Does anxiety, excitement or anger make it worse? Yes, yes and yes. If my husband was at all emotional before sitting down to attempt to eat, he would always fail.

      Try and be calm, even meditate if you do that, prior to attempting to have a meal. x 

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