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Achalasia - New to me!

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jmacl
jmacl

Achalasia

I've been on this website a few times now and have read many stories from others, so decided to share mine.

To keep it short, my symptoms were like many others , years of heartburn and pain which felt as if I were taking a heart attack, waking at night through coughing and sometimes I’d be choking on saliva/food which I seemed to cough up. I went to the doctors who gave me heartburn tablets and told me I had GERD ( not helped by my being overweight). Over the last year it has gradually got worse, food would at first occasionally stick as if in a spasm which would then pass allowing me to eat a meal. Now eating is a nightmare as I regurgitate after every meal regardless of what type of food I try to eat and liquids are also bad. I am constantly hungry and thirsty (don’t know if this is common) At this point I am almost 3 stones lighter and everyone tells me I’m looking great if only they knew!

I finally spoke in length to my GP who sent me for an endoscopy which showed up a severe fungal infection in my oesophagus which was treated and then retreated but still nothing improved so I was then referred to a gastroenterologist who arranged for me to have a further endoscopy and a Barium swallow which seemed to confirm I have achalasia. In the last couple of years I also developed Breast cancer which has been successfully treated however because of this I also had a CT Scan just in case I had Pseudo Achalasia which mimics the symptoms but is caused by something else…this threw me a bit because I hadn’t really considered this! I am still awaiting the result of the scan but I have now to go for a manometry followed by a visit with a consultant who I hope is going to offer me a long term solution!

After everything I have been through over the last few years I find this disease very tiring and at times I feel quite down because so many of our family/social occasions are centred around food .

I just hope for a positive outcome

Apologies if I have gone on a bit!

1 like, 20 replies

20 Replies

  • ann79577
    ann79577 jmacl

    Posted

    No you haven't gone on a bit hope you feel better soon I've just had the barium swallow get results this week I'm always choking on food or just drink even had IBS for years she said don't look like my gut works at all from top to bottom with all the medicine I'm on 
    • jmacl
      jmacl ann79577

      Posted

      Thanks Ann, I’m sure you will feel relieved when you have the results of your barium swallow .

      I know its necessary for us to take meds for other conditions but I sometimes wonder about any damage they may cause.

      Good luck

    • ann79577
      ann79577 jmacl

      Posted

      Never said what I had except for my gut don't work from top to bottom and put me on yet another tablet Linaclotide going for trilles on nerve damage next after holidays 
    • jmacl
      jmacl ann79577

      Posted

      I hope it all works out for you Ann, not knowing whats wrong is very frustrating!
  • AlanJM
    AlanJM jmacl

    Posted

    Getting thrush, or candiasis, is not uncommon.   There are some tips about achalasia on the website of the Oesophageal Patients Association.   Do keep an eye on your mineral / vitamin levels.   When you take supplements or pills, you may well have to ask for them in liquid form as they will otherwise stick around in your oesophagus.   You do need to be examined by a specialist for this, and having a manometry test (for the pressure at various points in your oesophagus) will help to diagnose exactly where the problem is.
    • jmacl
      jmacl AlanJM

      Posted

      Thanks Alan. I am being closely monitored by my GP re vitamins/minerals, my potassium levels were down then up and now seem to be slightly down again and this will be checked again in the next few days.

      One of my main worries is that I need to take a tamoxifen tablet every day because of my previous breast cancer and I now worry if this tablet actually goes anywhere?

      I will have a look at the website you mentioned

  • AlanJM
    AlanJM jmacl

    Posted

    I would ask your local pharmacist whether the tamoxifen can come in liquid or another form (eg under the tongue) - it is the sort of thing that pharmacists are good at knowing.  
    • jmacl
      jmacl AlanJM

      Posted

      I will ask re tamoxifen on my next GP visit, many thanks
  • Trisherbell
    Trisherbell jmacl

    Posted

    I wish you well with the manometry. Not a pleasant test, but having gone through it I can tell you the best thing I did was practise NOT swallowing. I did and am so glad as it meant the results were clearer. Relax if can. Concentrate on breathing - takes your mind off it a bit.

    If you've already had it done I hope it was OK and you got an answer.

    • jmacl
      jmacl Trisherbell

      Posted

      Thanks Trisherbell test is on Wednesday and I'm not looking forward to it!

      I hated the endoscopy and Ive had two of those! I have been practising not swallowing and will hopefully manage to keep calm.

      Like a lot of others I have had various procedures/treatments in the last couple of years and although many were unpleasant, you have just got to do it.

      I just want this to be fixed if possible!

    • jmacl
      jmacl Trisherbell

      Posted

      Hi Trisherbell,

      Well had the manometry test early morning and got to say unpleasant is an understatement!

      It took a few goes to get the tube in place but hey ho it’s now over so hopefully onwards & upwards.

      From discussion / test today it looks like there’s not much happening once I swallow any food or liquids so hopefully when I see the consultant in a couple of weeks I’ll be offered a long term solution!

    • Trisherbell
      Trisherbell jmacl

      Posted

      Well done for getting through it! It's truly awful! But, it gives answers. Come back when you've seen the consultant, I'm interested to know your diagnosis x
    • jmacl
      jmacl Trisherbell

      Posted

      Will do How long did you wait from diagnosis to myotomy and did you have any other procedure before this?
    • Trisherbell
      Trisherbell

      Posted

      I had endoscopy, barium swallow, then manometry and 24hr pH test same day. Saw consultant 6 weeks later, he operated 3 weeks after that.
    • jmacl
      jmacl Trisherbell

      Posted

      Wow quick turnaround! will let you know how I get on x
    • jmacl
      jmacl

      Posted

       

      I thought I’d share the latest on my achalasia story.  Yesterday, I had a balloon dilatation!

      Initially I didn’t want this and was looking more to surgery however when I spoke with my consultant last week he told me that the waiting list was 4-5months for surgery but that dilatation could happen within the week and that if successful, it may prevent the need for surgery although he did also point out that for some it was not long lasting.    After some time I finally very nervously agreed to the dilatation, having had a bad experience with my first endoscopy.

      I felt that the wait for surgery was too long as I have now lost 4 stone due to the disease and also I need to add, partly due to the 5 day liquid diet before the procedure!

      I’ve got to say that it was not a pleasant experience and the heavy sedation promised was definitely  not what I would have classed as heavy - I was hoping to feel nothing but need to say it didn’t quite work out like that, although it may be different for anyone having this procedure elsewhere,

      The contrast swallow I then had later in the day showed that liquid was getting through all be it slowly, hopefully this will improve over the next few days 

      Today, I have slight pain & discomfort behind my breastbone and am still on a liquid diet with soft foods gradually being introduced over the next few days but it’s amazing to feel cold water etc. arrive in my stomach.

      I do hope that it works and am trying to be positive.

    • AlanJM
      AlanJM jmacl

      Posted

      I think any improvement is a great joy that you will want to celebrate, but you are right to be realistic about the probable short term effects of dilatation and to look to the surgery for more long-lasting relief.   Meanwhile look after your nutrition and check your mineral and other levels to keeop yourself as healthy as you can with liquid / soft intake, and, if you possibly can, try and relax around eating because the inevitable tension does often contribute to the problems.
    • jmacl
      jmacl AlanJM

      Posted

      Thank you for the next few days i am on soft foods with other foods gradually being added back in.

      I do worry about eating some foods eg bread, meat but I will probably be more aware of what i put in my mouth from now on

    • AlanJM
      AlanJM jmacl

      Posted

      There is a survey done amongst achalasia patinets in July in the meeting notes under Oesophageal Patients Association - The oesophagus - achalasia.   The majority would steer clear of white bread because it sticks around and does not clear easily.   You can add rice to that and other similar food that congeals if it stays in one place.   Texture is important and some meat has 'stringiness' that might cause problems.  Similarly anything with skins like peas.   Spiciness can be a problem, and medication where the pills stay in the oesophagus rather than entering the stomach and then dispersing from there.   So if you take pills, ask the pharmacist if there is a liquid form.
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