Hi, my name is annk! Is anyone else living with acalasia?

annk

I am in the middle  of tests for acalasia,  I'm suffering  a year  and a half now and I have lost over 34lbs, I am waiting  on a manometry  test that seems to be taking forever,  my symptoms  aren't  always the same , I've had botox  in my esophagus  which was great,  but now after  10 weeks  it seems to have worn off , and I'm drained mentally  and physically  from living  with this, is anyone  in the same boat thanks.

chiarieds

Hi @annk - & welcome to the community. I'm sorry for what you're going through, & the lengthy wait for a manometry test.

We do have other members that have achalasia, & a search for this brought up this recent post:https://forum.scope.org.uk/discussion/87474/hi-my-name-is-mcdonald751-i-have-achalasia-and-would-like-to-get-in-touch-with-fellow-sufferers   perhaps replying there may bring you in touch with that poster, or you may get a reply here. Have you been offered further botox treatment?

annk

Thank you for the welcome, no i have not been able to speak to my consultant, even though i have rang 5 times, with other small issues from the botox, i just needed general information, his secretary told me to contact my own doctors, sadly i spoke to 3 and they all told me the same thing, they knew very little about botox, i was the first case they had come across, his secretary did say, he was not doing anymore botox, and i was to wait on this test, which can take up to a year to be seen, basically i am from pillar to post and no further on.

chiarieds

I'm sorry to hear that @annk - especially as you found the botox helpful. I can well imagine that it's not great having to wait so long for your manometry test so progress doesn't feel as if it's been made sadly.

annk

I felt i got my life back for those 10 weeks, i could even plan a day ahead with my grand kids and friends, when i try and explain to people what this is like, they think its just a bad touch of heart burn, i can honestly say that it got so bad before the botox, that i wanted to die, because so many doctors here, know so little about it, they try to turn it into a mental health issue, its sad that it reaches that point, thankfully the mental health team agreed with me, that it was all to do with my symptoms that it was dragging my mood down, i dont even know how long i was meant to get from the botox, because my consultant never did a follow up to inform me, so i am in limbo.

chiarieds

From what I can see botox can be effective for an average of 6 months, tho the NHS is more optimistic: https://www.nhs.uk/conditions/achalasia/   The majority of info I got from USA sites or publications; unfortunately another case of the USA being ahead of our own Drs. Perhaps after you've had your manometry test this may help your Drs understand more, & therefore help you.

I don't know if you've come across info about achalasia on this website: https://gutscharity.org.uk/advice-and-information/conditions/achalasia/  which does mention botox.

annk

Thank you kindly, yes i have read up on everything about the condition, its now just a waiting game, and i dont want to lose any more weight, i thought the botox would have lasted longer, but it did help, but thank you for this information.

ben1982

Hi @annk,
I’ve had this condition since around ‘99. No one can possibly imagine what it is like living with this condition and how painful it is to do a simple and fundamental part of everyday life like eat/drink. 

I find it so rude when you explain your condition to someone and they retort with ‘I wouldn’t mind that for a week’. 

I have had a few procedures that are available, the stretching and key hole surgery to remove the muscle in my gullet. I’d love to give you better information but a have found that neither has given me any success. 

The surgery seemed to give me relief for about 10 years however ever since I have suffered with chronic heartburn as the muscle is what keeps the acid down. 

Unfortunately this has been something that I have just had to get used to living with. Over the years you get used to the things that affect you worse and cut them out or prepare yourself for a flare up. 

Over time the weight will just level off in my experience, I did lose to begin with but 20+ years on and stopping smoking my weight has always stayed between 11-11.5 stone. Never below or never higher. 

Best wishes. 

annk

Sorry  to hear that Ben,  it's living hell if I'm honest,  I'm waiting  to see a specialist  but I have already  seen 3 consultants,  one was just so flippant about it, I actually  left in tears, he really had no idea, I haven't  been fully  diagnosed  yet, but I know myself,  I have hiatus  hernia and reflux this years, but it has went beyond  that in this past 16 months,  I can't even plan a day ahead, I see people  talking  about POEM and I am trying  to read up on all this as much  as possible,  that's why it's great when I get feed back from people  like yourself,  as to what works or even helps, it's great you got those ten years, and I know  what you mean about  the heart burn,  I've lived with it this years, can you go for any more surgery  Ben,  or is that you for now.

ben1982

I can totally feel for you, while I was going through my gp they were terrible. Treating me for heartburn and indigestion to start with, I hadn’t had either to that point but I knew it wasn’t that and when I’d been numerous times they said we will send you for a barium swallow but failing that they was talking of sending me to a psychiatrist. I was livid. Fortunately once I was under the hospital thing started to progress much quicker. The barium found a narrowing in my throat and the lazy gullet. 

Keep persevering with them and hopefully you’ll start to see progress, once I got a diagnosis I was actually mad at how long it took through the gp as the diagnosis seemed to be exactly what I was describing. I know it’s quite rare, but these are apparent professionals we seek advise from. 

As far as I’m aware I’ve had as much is available. It was all that was available at the time, I don’t know if there have been any advancements but having had it for about 22 years now it’s just something I’ve had to get used to living with. 

I try to manage it as best I can the only thing I really struggle with is the constant heartburn which is a result of the operation. Knowing now I’d probably opt against it if I’m honest. 

Everyone is different though so I hope something works out for you   

alison71

My daughter had chronic achalasia since being 13 yrs old and affects each sufferer different ways. It’s a progressive illness and some have a mild form and some are severe. My daughter has had Botox, balloon dilatation and Hellas procedure afew times and for her nothing as worked. She now has to be fed via a peg in her stomach and has horrendous chest pains that mimic heart attacks. She has been on dla and then pip since the age of 13, she is now 27. We did have to tribunal it twice under both systems but won both without any problems. Achalasia is an auto immune disease so make sure you make that clear on the form and also put that due to it being such a rare disease that it isn’t actively being researched for new treatment etc so can only do so much medically. Sleeping at a 30 degree angle will help with the aspiration too. Hope this helps and good luck 

Tori_Scope

Thank you for sharing @alison71  

wildnat123

ben1982 said:

Hi @annk,
I’ve had this condition since around ‘99. No one can possibly imagine what it is like living with this condition and how painful it is to do a simple and fundamental part of everyday life like eat/drink. 

I find it so rude when you explain your condition to someone and they retort with ‘I wouldn’t mind that for a week’. 

I have had a few procedures that are available, the stretching and key hole surgery to remove the muscle in my gullet. I’d love to give you better information but a have found that neither has given me any success. 

The surgery seemed to give me relief for about 10 years however ever since I have suffered with chronic heartburn as the muscle is what keeps the acid down. 

Unfortunately this has been something that I have just had to get used to living with. Over the years you get used to the things that affect you worse and cut them out or prepare yourself for a flare up. 

Over time the weight will just level off in my experience, I did lose to begin with but 20+ years on and stopping smoking my weight has always stayed between 11-11.5 stone. Never below or never higher. 

Best wishes. 

I had the Hella monomy I think its called big op over 15 years ago, I suffer horrendous with pains like heart attacks, just recently had another barium swallow to see what else if anything can be done for me now. This causes great anxiety everyday, getting to a point where I can't cope with it anymore. It doesn't matter what food I eat I get pains even with water. I've had all the tests done, the consultants now saying im a difficult case as they not sure what else they can do. I know that drinking really cold water can ease the pains but sometimes can last for hours. 

Tiddlesbrooke23

Hi
I had the heller 4 weeks ago after suffering for 2 years being told it was acid reflex . This last year has been terrible unable to eat and drink I lost 8 stone in weight . Been in and out of hospital since May being dehydrated on all 3 admissions  . I had botox which lasted 2 days ,then admission again this time had to be NG feed ,IV fluids.  They kept me in for heller operation, what a change in my eating I was 78 kgs on discharge I am now 82 kgs it's so nice to know that food and drink are staying down ,and I can eat a meal with family without leaving the room to vomit.    
Food is try soft foods first and then test different foods I keep a diary  I can't do bread ,cake ,pastries,pasta or rice . 
Only issue I have had is terrible trapped wind ,that causes  alot of pain under chest and back.  But I am looking forward as just bring able to eat and drink is heaven sent.
Best wishes to you and I hope you get an appointment soon . 

L_Volunteer

@annk How have things been for you more recently? I appreciate it has been a little while since you last posted on this thread now.

I want to make sure you have access to the support you need and deserve but things might have changed since. Please don't hesitate to let us know if we can do anything to help