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Can anyone advise?

Posted , 4 users are following.

Tracy3105
Tracy3105

I have had Achalasia for 7 years.  It has got progressively worse over the years.  I was formally diagnosed 3 years ago.  I have had Botox twice which has been fantastic and each lot of Botox has lasted me a year.   Before Botox I lost 4 and a half stones in weight.  I could hardly function! I was weak and lifeless I was given protein drinks etc.  The Botox has been amazing.  I can keep things down and put on 15kgs in weight.   The problem is the consultant has informed me that they will not offer me anymore Botox due to the scarring and has said that I need to be operated on.  I have resisted the operation and I am aware of the down sides to it and it is such a big operation.  I am 45 years old.  The consultant said he would consider the balloon because i am really not keen on the operation.  Has anyone else followed a similar path like me?  This Botox has now almost worn off and the pattern of bringing the food back is just the same I see the consultant in July I have lost half a stone over a 3 week period and feel much like a cow I graze on food all day. I do not feel ill I just bring up some of what I eat sometimes all of what I eat and drink the same thing happens with fluids. I am eating extra choc and cakes and crisps anything to keep the calories up.  I am petrified of looking like I did before.  This condition is a strange one and for me seeing as I have dieted all my life!!

0 likes, 6 replies

6 Replies

  • AlanJM
    AlanJM Tracy3105

    Posted

    The botox has had a good effect so that must give the surgeons good information about what would work in the future for you.  Long term, though, you cannot keep having these short term solutions without compromising the effectiveness of a better solution.   If your fear is the return to how you were before, I think you must try and be brave to trust the advice of the surgeons.

    It is fairly easy for those who have had successful major surgery to encourage you down that path.   I think the main issues are whether you trust your surgeon's advice, whether you understand the issues around the surgery, and whether you can contact those in a similar position who have undergone similar procedures.   The only thing I would add is that the longer you leave it, the greater the chances of your oesophagus becoming floppy and less resilient to cope with the surgery.

     

    • Tracy3105
      Tracy3105 AlanJM

      Posted

      Thank you for your response.  I had not considered the oesophagus becoming floppy and less resilient to cope with the surgery the longer I leave it my thinking was that because the Botox seems to last me a good 12 mths I could continue for now on Botox but I guess you are right!  Thanks again.
  • Bobogarrett
    Bobogarrett Tracy3105

    Posted

    OPA_AlanM's point about the esophagus lengthening and becoming flacid (and prone to folding over on itself like a twist in a garden hose) is a good one. If I were you, I would get surgery. I am scheduled to get surgery (my first treatment, actually) in three weeks. It's a good surgery. It's usually highly effective and is rarely detrimental. Every night I scour the internet for people's testimonials about treatments, and surgery is spoken highly of.
    • Tracy3105
      Tracy3105 Bobogarrett

      Posted

      Have you considered POEM.  I know very little about it as yet but it is something I intend to look into.   I hope your surgery goes well.  Would you kindly let me know how you are going on when you feel up to it?  Thanks for your advice.
  • MazD
    MazD Tracy3105

    Posted

    I never had the extreme symptoms that you're suffering but I was diagnosed and had the op a couple of years ago and I'm in my sixties. It's not the huge deal it used to be now that we have key hole surgery. I can't even see the scars! I was never in any pain (but everyone is different). My recovery was amazing. Unfortunately, the extreme stress of caring for my disabled partner has set me back a bit. I've just had all the tests again for reflux (only experienced at night) which ironically, i never had before but it's more to reassure me than anything else. I'm now managing the reflux by identifying foods/drink that cause it and not eating too late in the evening. The op is the only definitive answer to this condition. Good luck.
  • mum_of_H
    mum_of_H Tracy3105

    Posted

    Hi -- I feel for you. My five year old daughter started having severe symptoms of achalasia. She had balloon dilations which she didn't respond to. Then she was offered botox, but her doctor decided that the botox might increase the risk of her oesophagus changing and then becoming more difficult to operate on. We found the best surgeon we could find (meaning, someone with as much experience with the myotomy and fundoplication as we could find), then we went ahead with the operation when she was six years old and not able to keep anything down at all except maybe some water - even that came back up. The only options left were ng feeds or peg feeding so we felt that surgery was our only hope. She had the big operation and has all her energy back. She is happy, energetic, healthy. It was the turning point for us. She gets some pain in her tummy maybe once a week, but compared to life before the operation, life is brilliant now. All the very best with your journey.

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