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Living with achalasia, awaiting dilatation

Posted , 7 users are following.

diederik
diederik

Hello,

I am so glad to have found this place!! I am a 44 year old man living in Belgium, and am suffering from Achalasia type II since the beginning of this year (more or less). After a long way of tests and hospital visits during the summer, the diagnosis of achalasia was made one month ago, and it felt like a bit of relief - finally I knew what was wrong.

Next week there will be a dilatation, and I hope to have some positive effect from it since every meal is now a real problem.

I hope you don't mind I post on an UK froum living in Belgium, but there are actually no patient-orientated fora with achalasia-patients in Belgium, and only a very, very small one in the Netherlands. So I hope to be able to tell my story here and find or provide some comfort to people suffering from the same, and very intrusive, disease.

Many greetings from Antwerp,

Diederik

0 likes, 10 replies

10 Replies

  • graeme35202
    graeme35202 diederik

    Posted

    Hi Diederik

    Firstly this is a good forum for everyone around the globe and it does help many understand achalasia and the treatment options. You say you have had the tests and have a firm diagnosis of your condition.

    A dilation may help you in the short term but often the best option is surgery such as a myotomy. It may help you to try eating food which are easy to swallow and avoid those that can cause a probelm i.e bread and potatoes and rice. Pasta is good. Try eatong small mouthfuls and chew well. You must eat slowly and drink water with your meal, not wine. Wine can cause a spasm. Cold water will help.

    Have the dilation if thats what your physician has recommended and see if there is any  benefit.

    Graeme (Bristol UK)

  • MLONDON
    MLONDON diederik

    Posted

    Hi i am 57 and was diagnosed late last year adout this time, not sure what type of

    achalasia it was never given a number , I got to a point where I was unable to swallow much at all .I found that I could feel a build up of pressure in the back of my throat .I was thinking that a dilatation would be my best option but I was advised that a myotomy with fundoplication would be a good fix as I had not had any dilatation

    I had the operation in June 21 and have not looked back .from the time I was

    diagnosed my weight dropped by 52 lbs from 17st I have now gained about a 1st

    I am now able to eat and drink almost anything except rice not a great loss.

    Mark C

    • graeme35202
      graeme35202 MLONDON

      Posted

      Yes my experience is the same as MLONDON. I find rice difficult to swlow unless i eat it with some vegetables. Chips can be a problem too but i have found a glass of cold water with a meal helps. I love wine but not with food as it makes swallowing worse.

  • Shivashiva
    Shivashiva diederik

    Posted

    Hi Diederik

    My son is also awaiting dilatation. He is 14 and has Type I and II. Dilation works well for type II.

    All the best.

  • yole
    yole diederik

    Posted

    Hi Diederic,

    read your story with a so simple acceptance of facts is great and warming. So, welcome!

    Hope  dilatation will be enough to solve your feeding problem. In case will be not, I am sure your overwhelming positive attitude will ease all nexts steps, if they will come.

    Greetings to you and Good luck!

  • diederik
    diederik

    Posted

    First of all: thanks for the helpful and warm comments. I feel gald to have found a place where I can share my living with this new "condition".

    I've just arrived home from the first dilatation (or is the correct word dilation?) in the hospital in Antwerp. It went quite well, actually: it's no pleasant ofcourse and I had some nerves beforehand, but the staff and the doctor were very kind and helpful. Feeling weak now since I wasn't allowed to eat anything today, and being advised to restart eating slowly over the next couple of days.

    So far the good news, but the doctor told me too I have to come back for a second dilatation in two weeks' time. I found this a bit troubling: has anyone here been given a second treatment within two weeks of the original? Apparently the doctor doesn't want to take any risks, and he says that by doing it twice, the effects could last longer.

    So: relieved that it's over, hoping that I will be able to eat something tomorrow without much trouble, and a bit worried about the second treatment following so soon.

    All the best, and have a fine week-end,

    Diederik

  • Pasha333
    Pasha333 diederik

    Posted

    Welcome Diederik smile 

    My hubby is awaiting Heller's (hopefully very very soon) and, like yourself, was diagnosed after a long drawn out process. We too felt the relief, albeit short lived, when we finally found out what it was.

    This is a great place to share and find real support from those who know what living with this condition is like.   

  • yole
    yole diederik

    Posted

    Hi Diederik,

    I am glad dilatation is went well.

    Could be an explanation about a second dilatation so close : it is possible your oesophagus wall is not very elastic and at this first time they did not want to push too much, just to avoid risk of a tear. So they made few millimetres this time and are hoping to do few more next time.. Doing both in a short while would avoid that oesophagus set back like before too soon, as did with me at my second one.   After my first one, I 'm been still on liquid diet for 1 month and then step by step, near normal diet, except for dry food (bread, sandwiches, biscuits, chicken meat). After 1 year and half the food started to stuck again, so I  had a second one. But this time did not last longer, I needed a 3rd after 3 months, but the wall  wasn't elastic enough, they went forward just 3 mm, the risked of a  tear was too high, so they stop. After some consultations we decided for Heller's Myotomy.

    ​I hope warmly this is not your case, but whatever will be, trust your doctors, they know what they going to do and in any case you will be aware about any decision and for which reason, because you will take decision with them. Ask for a consult with surgery equipe, I am sure they will give you all the explanations you need to reassure you.

    Wish you all the best!

    • diederik
      diederik yole

      Posted

      Hi Yole,

      Thanks very much for your reply! I will ask my doctor about the second dilatation being so close upon the first one, I try not to bother too much... But I guess your explanation could be near the truth.

      As far as the diet and actual swallowing is concerned: I notice things do have improved quite a bit, drinking for one is back to normal (except for red wine, which has a tendency to hurt - which is a big loss, I'm a wine lover), food is improving, although I am bit reluctant to try much out for fear of getting it back stuck. Soup, youghurt, pudding go fine and are my daily nutrition for now ;-). Guess pasta and brown bread will go as well, since they were the last things more or less passing through before the dilatation (white bread was a disaster).

      And yes, I do trust my doctors: they know what they are doing, and my specialist is really helpful.

      Thanks once more for taking the time to answer my post, and wish you all the best too!!

  • kutieluvsmj
    kutieluvsmj diederik

    Posted

    Hey everyone my name is Jessica i am 25 years old. i have been having trouble swallowing for almost 2 years. It started with acid reflux then one day i woke up and couldnt swallow. i went from 125lbs to 107lbs. i havnt gotten any tests done due to my anxiety i fear anasthetics and that long camera they want to put down my throat. im not just scared i am beyond terrified. Well now im 9 weeks pregnant and my midwife says i need to gain 25-30lbs. I dont know if i have achalasia or not but when i swallow my food hits my chest. very little gets to my stomach. and then my food comes back up. i even try drinking water but it seems the water sits on top of the food and then it pushes back up with the food and i end up regurgitating the food and the water. Someone had mentioned baloon dilation he said he went through the same thing as me and after the procedure he gained 30lbs and was able to eat again. i know every experience is difference but i really really need this to work for me i need nutrience for my baby. i cant get anything done until my second trimester. my first apt with the gi doctor is dec 5th. anyone is anasthesia scary? i just cant get over that part
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