My Achalasia Story (1 year and 6.5 stone later)

Digestive health
1

I've browsed on here a couple of times and have found some comfort in hearing stories from others, so thought I would share mine. I'll try to keep it short but I'm sure i'll blab on.

My symptoms started a year ago, I kept getting heartburn and a coughing whenever I ate or drank, went to the doctors he gave me heartburn tablets. My symptoms got worse I was being sick in my sleep and my throat would make gargling noises whilst I was asleep (my boyfriend is still putting up with this) then I started being sick after I ate certain foods, I was given anti sickness tablets, then I was sent for an endoscopy which apparently came back fine (although the doctor had told me my heartburn and sickness was a result of being overweight before doing the endoscopy) My symptoms continued I was then sent for an ultrasound to check for gallstones (I HAVE NO IDEA WHY) by this point I had already diagnosed myself with achalasia and was begging my gp for a barium swallow. SHOCK HORROR I DID NOT HAVE GALLSTONES! I was finally sent for a barium swallow (which when you cant swallow Is quite hard to do) which confirmed achalasia. I was then referred to a Consultant (MR WEAVER) who sent me for a manometry test to confirm the achalasia followed by another endoscopy. So achalasia confirmed I was now awaiting surgery. By this point I was living on surgary drinks and small amounts of soup, rice pudding and ice cream. Feeling very tired and depressed most of the time, I think by this point I had lost about 4 stone.

The heat wave, so whilst everyone else was enjoying the rare English heat I was sat inside throwing up EVERYTHING and I mean everything even my on saliva wouldn't stay down (and despite numerous trips to my gp, blood tests indicating very low potassium levels I was just given soluble medication which I merely threw up!) I had nappy sacks in my car so I could be sick, my life was hell! I managed to drag myself to my friends wedding do in July and after just 10 mins I passed out and had to leave. My boyfriend then took my to a&e where I was admitted I was in hospital for 7 days, I had lost just over 1 stone in 2 days from dehydration! Mr Weaver didn't want operate so I had botox injections to relieve what had become complete dysphasia! This botox was done In July so has now worn off and I am now on a diet of baby rusks with milk, hot chocolate and ice cream ( but I still sick these up). I have also just found out that my surgery will not be til the new year so no Christmas dinner for me.

Whilst the botox was relieving my symptoms I still had a VERY limited diet primarily soft foods, no bread,red meat, biscuits, potatoes or naughty foods! Will this still remain after surgery!

I have now lost 6.5 stone which I am very happy about, yet I am currently feeling very sorry for myself and get frustrated trying to explain my condition to people. As I also find my achalasia flares up more if im anxious stressed or upset, to swallow anything I have to be very calm and relaxed (which when you feel pants is very hard to do)

Sorry to ramble on, im finding this very therapeutic and I have loads more to say! Hope someone can relate to this, find comfort or offer advice/support.

Mercedes x

2

Hi Mercedes,

Sorry to hear what you are going through. I can imagine it must be dreadful when you can't keep anything down after eating. Why is the surgeon waiting until after Christmas to do the operation?

I have had problems eating since last January but not as bad as you. I had an Endoscopy in June and they found Inflammation, H Pylori and a mild Hiatus Hernia. I knew about the Hernia because I have had it a long time.

I am now waiting for a Barium Swallow. My Dr have chased them up 3 times and I phoned the hospital myself on Monday, to ask how long I have to wait. After I told them about my weight loss, (over 2 stone) and surviving on soft foods, she said they will review it again to try and get me in earlier. At the moment I don't know if my Hernia is causing the problems.

I haven't been sick with my symptoms but get a heavy feeling in my upper chest which gives me dry retching/gagging. It also feels as if I have a lump in my chest. I then start gagging and I get watery stuff coming up. When this clears my chest feels better. Do you get any of these symptoms?

I just hope I can get through the scan because the stuff you swallow is not easy. I am afraid it will stick in my chest. How did you manage to cope with the scan?

Merryl

.

3

Hi Merryl

Unfortunately my case is not seen as urgent, plus my consultant has referred me ob to another consultant who has more experience treating achalasia. Which seems to involve more waiting.

I do get what feels likea lump iny throat/cheat this is normally caused by food that is stuck so I sometimes hqve to make myself sick to relieve it and to stop myself from choking. The tricky part of the barium swallow is swallowing in one swallow, but nake thr doctor aware of how difficult you find swallowing, I had a sick bowl with me amd never managed to do exactly what they wanted but it was enough to diagnose it.

I have heard that a hernia can cause very similar symptoms to achalasia, I hope whatever they find, they are able to help to quickly.

Hope this helps

Mercedes

4

Hi Mercedes,

I would have thought losing all the weight you have, should be classed as urgent. I hope the operation goes well for you!

Merryl

5

Hi Mercedes,

Sorry for the questions. I would like to know, when you get the food stuck in your chest does it stop you from burping. I have been getting this and it has been worse these last couple of day's. When I can't burp anything up that's when the retching /gagging starts and I always get the watery stuff coming up and sometimes clear white frothy stuff. It is very uncomfortable until it clears.

I noticed you get gurgling noises when asleep, I get this in my throat when lying down, but as I live on my own, don't know if it happens in my sleep.

I guess I am trying to find anyone with the same symptoms as myself..

6

Hi ya

Yes I find it difficult to burp and when I do it feels fantastic! The white frothy stuff might be saliva that has built up around stuck food. To prevent sickness and reduce gurgling when I sleep I keep my head propped up with lots if pilliws on a gradual slope.

X

7

Hi Mercedes,

Your experience sounds exactly like mine, no one can understand how dreadful it is unless you have been through it . I experienced the same horrendous problems for 15 months with wrong diagnosis and thinking I was going mad, I lost 4 1/2 stone and like you could not even swallow my own saliva until I had hellers surgery in aug 12 at St Thomas's London Mr Botha. I have now put on 2 stone and have my life back, I have energy, my hair is fab no longer thinning and most importantly of all I can eat - not as a normal person but almost as long as I chew well and eat slowly. It feels like a miracle, be strong, you will be much better after surgery. It feels like a never ending nightmare but there is light at the end of the tunnel, and although you probably don't believe it now, you will look back at this terrible time and think I survived it. Thinking of you xxx

8

Aww thank you, it is like living in an achalasia bubble! Refreshing to hear that it will get better with surgery.

Thank you for commenting I appreciate it xx

9

Hi Mercedes

I too had similar problems like yourself. Im lucky in the fact that I had my operation 2 years ago and

havent looked back but before the op it was a living hell. My problems started with foods then water, i

couldnt digest anything. The doctor thought I had a blood disorder! then he said it was stress and signed me off for 2 weeks.

I was then sent for an endoscopy which was clear and classed as normal. After that I was given

omeprazole as it was diagnosed as acid reflux and inflamation of the gullet!

Many weeks went passed and the weight started to come off so I was sent to ear, nose and throat who

said they couldnt help. I was 13.5-14 stone but by this time i was about 9-9.5 stone and rapidly losing

weight.

Finally I was sent for a barium swallow where i was diagnosed with achalasia within 5 minutes. It was a relief to be diagnosed and hopefully get some light at the end of the tunnel.

I was given tablets to disolve in my mouth before I ate, but there was no guarantee that they would work

and I was put on a waiting list to see a specialist. after 2 months I seen a specialist who carried out a

mammottery test (Hope thats how you spell it) and confirmed achalasia. By now i was 8.5 stone and

looked terrible. My daily diet was weetabix for breakfast, soup for lunch and soup for dinner. All the time I

stood next to a bin with a bag so when i threw up i could dispose of it straight away.

Now it had gotten to the point that My relationship with my wife and son was being effected in a big way

and I was really low and had just had enough. Luckily thought I had my operation on 4/7/11 and since

then Ive been fine.

Yes food still gets stuck if i eat to fast and you still get that feeling like you have swallowed an ice cube.

Bloody painful too. I still couch up the white foam (YUK) and if i overindulge with rich foods or alcohol i get horrendous acid reflux. But that said I have my quality of life back, yes it takes a while to get used to living with achalasia but you will get better.

Im now 12 stone and feel great, hopefully you will be too.

Gareth

Edinburgh

10

Hi Gareth

Thank you, its so nice to hear that it does get better :-) I'm lucky that I was very overweight so im currently looking pretty good with my weight loss and I've got to fight to keep it off after my op. Thank you for your message has put a smile on my face. I find achalasia very frustrating and only people with it can understand the nightmare.

All the best

Mercedes

11

Hi Mercedes!

Reading your story brought tears in my eyes. I know EXACTLY how you feel.

I had just underwent the surgery for achalasia in August. I had been suffering with this condition for almost 2 years. My symptoms started with chest pain. It used to happen all of a sudden - tightness in the chest - last a few seconds and dissapear's. From seconds it became minutes . I saw every specialist you can think of - SPINE , ORTHO, CARDIO, GASTRO - even a shrink that prescribed me with depression medication.

Around april , I could not keep any food down. I initially thought it was a temporary thing, but it just went from bad to worse. I use to eat for the sake of it, and go into the bathroom and puke! I started feeling anaroxic - thought maybe it was all in my mind.

I got married in August - and I cant even begin to explain the difficulty I had - During my wedding dinner reception , I had to keep running to the washroom because every time I took even a bite of anything, it would come right out.

I spent my honeymoon with plastic bags in my handbags - just throwing up every where. I am SOOO grateful for my amazing husband that NEVER left my side . We got back from the honeymoon and I immediately got admitted. Saw my 4th GASTRO specialist. He requested a barium swallow and a manometry.

He then diagnosed me with ACHALASIA. In a way I was glad to know there was something wrong and it was not all in my head. I opted to have the surgery ASAP.

It has been 3 months since, and I am starting to be able to keep food down. But it's just not the same. My doctor explained to me that I now have to adapt to this new kind of lifestyle - slow eating, sips of waters, and to understand that I will NEVER have the same eating ability as a normal person. My esophageal muscle is weak and will remain weak.

So to think that I am only 25 years old and have my whole life ahead of me scares me a little feeling I will never get to chew down a whole burger or gulp down a big glass of milkshake - but then again - I still have a wonderful life to be thankful for,, So that;s how I go by each day..Realizing that there are people suffering more, and as BAD as achalasia is , and ONLY those that have been through it know - IT does NOT kill us..

I hope you find slight comfort in knowing there is someone that knows what you are going through.. And that things WILL GET BETTER..

All the best!

12

Hi

Can't believe you had to go through that during your wedding and honeymoon! Im only 26 so its strange to think that my eating will never ever be normal. Thank you for messaging me I really appreciate and its nice hear from others who have gone through or going through what I am.

X

13

Hi Mercedes,

I know this post is old, but did you have your operation and how are you feeling now. I saw a gastroenterologist 3 weeks ago and he wants me to have a manometry for 24 hrs. I was hoping I could get away with this because I have read it is not very nice and afraid I will be gagging a lot. Did you have the 24 hr manometry or the one they do at the hospital. I am still having symptoms but have 2 things going on so been waiting for different tests  most of the time. I don't know how long I have to wait for the manometry. I am having a CT scan on June 5th so something might show on there. Dr put urgent on the form for the CT.  

14

Hi Meryl, 

Yes I had my operation nearly 18 months ago now, all went really well and I rarely get any symptoms (I knwo which foods to avoid). I had the heller myotomy surgery which is when they cut and stretch the bottom of the esophageal sphincter. I had a manometry test done at hospital and if i'm completely honest i didnt find it very pleasant, i did gag and i was sick ( however it only lasted 20 mins half and hour and you do get use to it) Its not more uncomforatble then all teh sickness you will currently be experiencing and its the best way to diagnose the condition. I also know someone who found the manometry easier then a endoscopy. So it does vary.

Hope this helps, feel free to ask if you have any more questions. I know how horrible and alone you can feel at times.

Mercedes 

15

Hi,, Mercedes,

Glad you are now feeling better after your operation. I can't believe it was 18 months ago, time goes really quickly. I would rather have the manometry in hospital rather than going home with a tube down my throat. The specialist said if I don't have it done he can't do any more for me. It fills me with dread thinking about it. I am dreading the letter coming in the post. 

Merryl

16

Dear Mercedes

Reading your posts and all the others who have responded is quite comforting.

I have had difficulty swallowing on and off for a while now but over the last 6months it has got to the stage where I feel I am regurgitating most foods.

I was sent for an Endoscopy (worst thing I have ever experienced) which showed that I had severe thrush & inflamation of my oesophageus.

I have had breast cancer in the past which is clear now but because of this I was so scared that the dreaded 'c' was back again and causing my swallowing issues anyway long story short I have now been advised that I may have achalasia.

I now have to have a barium swallowing test followed by yet another endoscopy neither of which I am looking forward to but I realise its got to be done.

The ironic thing is that I have always been heavy and now the weight is dropping off and friends tell me how great I'm looking!

If it wasn't for the support of my husband & family dont know what I would do

Reading your post shows me ther is light at the end of the tunnel , thank you