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Does the op make a difference?

Posted , 7 users are following.

dawn3000
dawn3000

Hi there,

I'm new to all this problem. I'm 22 years old, female and I've been living with this for about 7 months now.

I don't remember when it started, all that I remember is that I used to have to drink loads of water before any food will move. That was back in July 2014.

I've been messed around for blood tests (they lost them two to three times) and then my doc was on holiday and I had to wait till they were back. Include my family who don't seem to understand my problem (I don't blame them, it is rare and they can only do so much)

Fast forward to today and I can barely eat or drink anything. Everything hurts. Its very rare that I have a "good" day as I call them. I've also lost over a stone in weight, feel weak all the time. I can't go and have fun with friends or even join in with family meals (Christmas will be interesting this year).

It came to blows last week when I was took to A&E by my very supportive boyfriend and had to be put onto a drip as I couldn't eat or drink anything (I threw up 6 times in the space of 4 hours, water didn't help me) but I was put on meds in hope it would help.

It helped that I didn't throw up anymore, but I still couldn't eat anything.

Yesterday I finally got seen to by someone who seems like they know what they're doing. He said that I need to do the dye test (I've forgotten the offiical name for it) but he's recommended the surgery but also advised me to do my research.

So it probably won't be til 2015 that I'll finally get to the stage of making the decision. As I mentioned before about my family. They all seem torn between the op and the balloon (I've also got a blood disorder that could complicate things if I did the balloon (Thats what the Doc said)). but I thought it would be better for myself to ask people who have this condition and how they cope.

So can anyone tell me if its worth it. I'm not scared for the op. I just want to be able to eat again, even if I never get back to my "normal" self, whatever that is anymore.

Thank you

1 like, 15 replies

15 Replies

  • larry12675
    larry12675 dawn3000

    Posted

    My wife has your condition and we have been dealing with this for several years and your right people even doctors look at you like your faking but as you know it's bad and it's hard to control. We have found that the operation that everyone thinks she should get may not cure the spasms and pain that can come from the esophagus altho it may help with eating. It seems that the sphincter on top of the stomach closes like your making a fist and won't openxwhenxits supposed to. My wife has been somewhat successful with Botox injections in that sphincter which relaxes it enough to make the it function better.  This process does not last so it has to be redone every 6 months to a year. She also takes a lot of medicines to help her as well. I can get into more detail with that if you like. Do your homework on the surgery and try to find a doctor that studies achalasia they are hard to find. We did find one so that has helped with some of our decisions. I'm sorry this has happened to you at such a young age hopefully it will get better for you. My wife still has good days and bad days but we are getting close to the time for another injection cause a lot of her pain is coming back. Good luck and I'm here if you have any questions
    • dawn3000
      dawn3000 larry12675

      Posted

      Hi there,

      Sorry it took me so long to reply to you. Thank you for your story. I'm sorry this has happened to your wife. I found out Monday just gone that I have Achalasia.And you're right, trying to find a Doctor who actually studies this kind of this is really rare. I've yet to still find one that has but I'll keep looking.

      Has your wife had another injection? I hope she is feeling better now!

      Thank you again

  • mum_of_H
    mum_of_H dawn3000

    Posted

    Hi Dawn,

    My 7 year old daughter had a Heller's Myotomy and partial fundoplication for achalasia about 6 months ago. She struggled with swallowing on and off, but it got really bad for about a year.

    The operation has given my daughter alot of relief, although she still does get episodes of pain now and then. She can eat and drink and go to school. She recently had some tests that showed there is still a bit of liquid pooling in her esophagus, but the esophaagus is quite open. So, they think the pooling is due to poor movement in the muscles and she might just have to live with a little 'muck' in her throat (she drinks sips of cold water).

    However, if you compare this with the fact that she could not eat or drink anything prior to the operation, the operation has been fantastic for her. We felt there was no option, in the end.

    We wish you every success with your treatment. Let us know how you get on. It's a hard thing, and (as a mum) I have found this support forum really helpful.

    • dawn3000
      dawn3000 mum_of_H

      Posted

      Hi,

      I'm sorry that it took me so long to reply to you. I'm also very sorry to hear that you're seven year old daughter has this condition. I have a brother the same age and it would have broken my Heart to see him go through this.

      I was officially diagnoised with Achalasia on Monday just gone; so now it's the waiting game of discussing my options with the Doctors. It looks like we'll be going for the surgery but we'll see what they say when I meet them next.

      I am so happy that you're daughter was able to get some normality back in her life. I've done some research into it and seen that I may experience pain every now and then but like you say, compared to what we've experienced, I can handle a bit of pain every now and again.

      I may get my parents to look up these forums for them to understand a bit better (as with no-one knowing much about it, it's hard for people who don't have the condition to understand the full extent of it)

      Thank you for your kind words smile

  • len27570
    len27570 dawn3000

    Posted

    Dawn

    I suffered with the symptoms you describe for many years.

    I was diagnosed with achalasia 2 years ago.

    While I consider my options like the previous poster Botox injections have provided good relieve.

    Do not rush into surgery.

    I have adjusted my diet and most days manage to cope.

    After losing 2 stone in weight i have managed to gain some weight recently.

    With time and good advise you will move to a better place.

    • dawn3000
      dawn3000 len27570

      Posted

      Hi there,

      Sorry for not replying to you. I found out Monday just gone that I do have Achalasia (I think I was frightened really of it all)

      I don't want to rush into the surgery but it sadly seems for me that there is no choice. The medications have not worked and I am not allowed the dialation because of my blood disorder.

      I have to wait to get my letter for my next discussion with the doctors so I will ask about these injections.

      The diet will well and truly be getting adjusted after this!

      Thank you for your advice!

  • mum_of_H
    mum_of_H dawn3000

    Posted

    Yes, of course - it is never wise to rush into surgery.  I totally agree with Len27570. However, I was just sharing our experience of the operation and its outcomes for us. All the best, everybody.
  • graeme35202
    graeme35202 dawn3000

    Posted

    In the first instance it is important to have all the tests before considering anything. A barium swallow, Manometry tests and blood tests to rule out Helicobacter or anaemia and to of course rule out a hiatus hernia. There is a path to follow.

    If the tests do reveal you have achalasia then hopefully thet will also reveal how much mobility you have in your oesophagus and how well the oesophageal valve opens to allow food to pass. There are various procedures they can do thought ehgold standard is really the Hellers Myotomy with a partial fundoplication. In laymans terms cutting all the muscles at the base of the oesophagus where it joins the somach and then making a new valve by wrapping the stomach around the base of the oesophagus.

    What treatment you have really depends on a number of factors. How bad your symptoms; weight loss; general quality of life; age; physical condition.

    The surgery option is effective and restores a reasonably good ability to swallow but in truth it is never going to be perfect. But its a whole heap better. If you suffer with nightime reflux from food pooling in your oesophagus then you wont have that anymore. Eating and finding everything is stuck in your oesophagus and having to dash to the toilet to vomit..that wont happen again..but you will still find food that cause a problem and its something you have to live with.You do have to modify your diet and choose foods that are easy to swallow and you have to learn to chew well, eat slowly and drink water (not alcohol) with food. I had the ope over a year ago and my life is 75% more improved that it was pre surgery.

    I always finish every meal now with a glass of water.

    Good luck

    • dawn3000
      dawn3000 graeme35202

      Posted

      Hi there,

      Sorry it took so long for me to reply, I believed I went through a "if I ignore my problem then its not there" but sadly I was officially diagnoised with Achalasia on Monday.

      After doing the Barium Swallow (which I may add tastes disgusting!) I saw with my own eyes that there is not a lot of movement (It looked like a dripping tap).

      My weight lost has been great. I have now lost over two stone in weight, which now puts me into the badly underweight category.

      I am happy with the fact that the night time pooling will stop, it would be nice to get some sleep for a change. And the running off thing, it's rather embarrassing for me to eat with family and friends now (I spent Christmas day in the kitchen just so they couldn't see me). Whilst I'll never be 100% again, I do feel comfort knowing that I will improve greatly from it. I've already complied a list of healthy food that I will eat once I have past this episode of my life.

      I am very happy to hear that your life has improved so much! That's lovely to hear and makes me a lot less scared about facing it.

      Thank you!

  • ricky20551
    ricky20551 dawn3000

    Posted

    My advice is to go for the dilation(balloon) first. It is not pleasant as you are only under sedation, and there is some strong pain for a few seconds at the point of dilation but it worked for me(for the 2nd time, the first procedure I had was over 25 years ago). It's not perfect even now but I can eat reasonably well with a little help from a glass of water. Of course there is no way of predicting how long the improvement will last before the oesophagus sphincter muscle tightens up again, but I'm hoping it will last as long as the first time. If not, I'll have the dilation again. If it ever comes to it I'd have the surgery, but here's hoping not!
    • dawn3000
      dawn3000 ricky20551

      Posted

      Hi there,

      Sorry it took me so long to reply.

      Sadly for me, the dilation is not a choice. I also have a rare bloody disorder which the Doctors do not know much about seeing as I have never had an op before or a tooth out (lucky me apparently) but the Doctor has warned me that because of this they do not want to put me at risk of them possibly causing damage and missing it, thus killing me off (that is what they said)

      I'm hoping that the dilation keeps working for you! And that you don't have to get it too often!

      Thank you for your advice

  • janski
    janski dawn3000

    Posted

    Hi there Dawn,   

    It would help to join our Achalasia meetup group, you can then chat face to face with other 'sufferers' and glean information and get support. We meet in London every month or so if this is convienient for you?  

    My personal experience is similar to Rickys and I would always try a Dilatation first, but thats only my opinion and experience. Mine is still working well after 7years or so. 

    Being able to make an informed decision is most important. The meetup group are getting together in December for a very important informative discussion with experts in London and if this is of interest let me know.

    Wishing you all the best

    Jan

    • dawn3000
      dawn3000 janski

      Posted

      Hi Janski,

      Sorry for the lack of replies, I was going through a "Ignore it and it doesn't exist" way of thinking but sadly I was officially diagnoised with Achalasia on Monday (05/01/2015)

      It's lovely that there is a meet up about Achalasia but sadly it is a tad too far away from me (I'm from the North East of England).

      I'm happy that the dilation is working for you! Fingers crossed it keeps working!

      It's a rather scary decision to make, but I'm hoping that I'll make the right one.

      Again, thank you for the invite to the meetups. I'm sad that I'm not able to attend. But if there is anything you can tell me from these meetups I would be happy to hear from you about them!

      Thanks again Jan

      Dawn

  • ricky20551
    ricky20551 dawn3000

    Posted

    Hope someone can post the dates & meeting places for future gatherings in London & I may be able to make it to one of them....thanks
    • janski
      janski ricky20551

      Posted

      Hi Ricky,

      You will need to join our Meetup group to come along, or be involved in any of the talks. if you google Meetup groups and look for Achalasia you will find our group that meets in London.....run by Amanda.   you can then join up (free) and will then be included.

      Hope this helps. Jan

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