Accepting having Achalasia

Digestive health
1

Hi everyone,

This is my first time on here although i have been reading your comments on here and on others sites for afew weeks trying to find out as much as i can about Achalasia as i have been told resantly this is what i have after having a barium swallow and then a Gesophageal manometry. It seems kind of strange having been given a name to something i have been living with most of my life i just didnt know what it was i just put it down to my stomarch not working right. I first went to the doctors 13 years ago about food not going down and bringing some of it back up, I had a gastroscopy done then it showed the junction between my oesophagus and stomach was slow to open but nothing more was done so i just carried on with just avoiding foods i know i couldnt eat and never attempting to eat anything without having water with me. Im 33 now and ive been living with this since i was about 18 i recantly went back to the doctors as things have got worse over time and i coud no longer pretend im fine. This time i had all the test done and now i have a name for whats wrong.

The only thing now is that the surgeon wants me to have the Heller myotomy surgery which im kind of getting my head around it just seems to be happening quickly. Ive been living this way for so long now the way i eat food is normal to me. I guess im just not sure of what i should expect my life to be like afterwards this is why ive been reading as much as i can online. afew peaple have said after the surgery its great and others have said they still struggle to eat this is what i dont understand if they remove the musle then how does it become thight again. Ive got an appointment soon with my consultant i think i will go armed with questions. I know ive prob gone on abit its just been reasuring that there are others like me out there that understand what its like to constantly have a to battle with food everyday.

2

Hi Nikki,

I had the myotomy done when I was 33/34. I am now 62 and for most of that time had no problem swallowing at all. Just the occasional problems with reflux but fairly easily dealt with. I am now having swallowing difficulties again. I would say go for it and have the surgery. It was fairly major back then as I had a thoracotomy but I think that may not be necessary now. I had nearly 30 years of normal eating which was fantastic.

3

Hi Nikki. It's scary but also productive to finally have some answers and some options. The reason some people eventually have to have another surgery is because the muscle is cut, not removed, and scar tissue can make it close back up over time.  The reason to get the surgery, regardless of how you feel about living with the symptoms, is that it tends to progress over time and your esophagus stretches out over time which can eventually lead to something called megaesophagus and then they may have to do a much bigger operation where they actually remove part or all of the esophagus.  Take a little time to figure things out but you should pursue some kind of treatment.  You should also join one or more of the Achalasia Facebook groups.  You will find lots of information there.  There is also a free download of a book entitled Living With Achalasia (or something like that).  Just google that and you'll find access to one of the Facebook groups, led by the author of that book, and the free download.  Good luck!

4

Hi amy56547

Thanks for explaining to me how the muscle can become thight again that now makes sense, Im accepting the fact i will now need to have something done about my condition i think i was just surprised when my consultant started talking to me about surgrey.

5

I know how scary that can be because I'm facing that myself.  With me, I'm not sure how quickly to act upon the surgery vs. taking time to keep getting informed about options.  There are two types of surgery, for example, the Hellers Myotemy and POEM (this is newer and so less available but done endoscopically instead of through the abdominal area.  The danger of waiting too long has to do with the stretching I was talking about.  Did your doctor mention anything to you about the size and shape of your esophagus since you've had symptoms for so long?  I'm sure that if it was a problem, he/she would have mentioned it but it would be good to know what shape your esophagus is in prior to any treatment.  Did you get the timed barium exam? (slightly different from the regular barium swallow) This test can show those kinds of details.

6

After I had Heller's done 30 years ago it was great - I could swallow easily again. Over the years it has got slowly worse again and I assumed that was due to the oesophagus healing and going into spasm again. But when they X-rayed me about 15 years ago they said this wasn't the case - it was just that the sphincter wasn't letting the food in to stomach.

7

hi my surgeon hasnt said anything about POEM although i have come across it when researching Achalasia, i will ask about it when i go and see him. im not sure what type of barium swallow i had but they did say my oesophagus was mildly dilated throughout.

8

Nikki

i had the surgery last May and would recommend it highly. I lived for 6/7 years with this condition (deteriorating over time) and finally had had enough at age 57!. The surgery was uneventful and the recovery with about 4/6 weeks of liquid/semi solid diets is fine. Make sure your surgeon is experienced (does at least two such surgeries a month!) as this is a relatively rare condition. Good luck and I am happy to answer more specific questions. Eating normally is a blessing.....

9

hi Alan have they offered you anymore help with your sphincter not relaxing to allow food to past through ?

10

Hi Nikki,

my experience with Achalasia was very quick compared to others in this group. I first starting having problems about 1.5 years ago. The condition gradually got worse up until earlier this year when it reached a peak and I could not really eat or drink anything. This culminated in an unexpected hospital stay in April where a lot of the planned tests were accelerated and I was formally diagnosed with Acalasia. (There were many attempts to diagnose prior to this and lots of different medications tried!)

I was then told of the options for treatment, balloon, Botox, surgery etc. My Consulstant recommended surgery due to my relatively young age (42).

A month or so passed during which, armed with a proper diagnosis, I learned a number of techniques for eating/drinking, and actually managed to function relateively normally and the weight loss reduced and my weight became relatively constant.

I then got a phone call on the Tuesday to invite me to see the Consultant Surgeon the next day to discuss the surgery in more detail. 

I wanted the surgery but was nervous as having read about a number of people who unsucessfully had it done. I asked about not going for the surgery at all, and my consultant put it like this. You can stay with the 'Status Quo' if you like, but I'll be seeing you at some point in the future anyway... In his view surgery was the most suitable treatment and is considered the permanent solution. 

He also recommended partial fundoplication. He said the chances of getting severe Acid Relux without surgery is about 50%, therefore with those odds its better to have it done just in case.

It was a very good discussion which lasted nearly an hour during which all sorts of aspects of the condition were discussed and options considered.

Ultmately I wanted to take control of my situation and not simply live with it. Therefore I elected to have the srugery done. I was admitted to the hospital on the Thursday, operation done on the Friday, and home on the Saturday. Two weeks recovery, then back to work.

Here I am 5 weeks later after the operation with the surgery scars starting to fade and I am delighted with the results. My surgeon has done an amazing job and I am building up my confidence in choosing different things from a menu. 

One of the most unusual aspects of Achalasia was hearing loss! I have my own theories on this, but since the operation, my hearing returned to normal within a few days. Not sure how common this bit is, but everyone's Achalasia story seems to be different!

Anyway I wish you all the best, and all I can say is that the Heller's Myotomoy (with partial funoplication) worked extremely well for me. As for its longevity, well that's a different question, but I'm happy, enjoying life, and looking forward to some fancy restaurants during our summer holidays!

 

11

Nikki, no I haven't really sought help. I may one day but the swallowing usually becomes difficult if I eat too much and so it makes me eat sensibly. However, when it's at its worst I can't even get liquids down so it could be dangerous. If it continues to worsen then I'll have to get something done.

Life before the operation was just impossible and I've had 31 years of reasonably normal life since, so I would suggest you go for it.

12

Hi David thanks for sharing your story being able to read about peoples experiences like ours has helped me loads over the past couple of weeks.

it is strange how some have there symptoms come on suddenly and others like myself problems come on over along time, although i probably should of asked for help along time ago. It crossed my mind afew times if i was causing damage to my oesohagus trying to force food to go down and it getting stuck and then bringing it stight back up, I had just become use to doing it and i became an expert at avoiding foods when i was out an about it was only when it became impossible for me to eat pritty much anything and i started fainting that my family said i need to go speak to my doctor because its not normal. After having all the test I was surprised when my consultant said my oesophagus was mildly dilated i thought it would of been more damaged im glad its not, athough he did say my oesophagus musles are weak and the peristaslsis ( the waves of contractions down the oesophagus) are impaired and my sphintcter doesnt relax,  I wasnt offerd any other treatment the surgery with partial funoplication is my only option i think its because im a good candidate for it. i had a slight pannic and said i needed time to think about it. i use to think surgery was a last option now im reliseing thanks to people on these sites that its to protect against furter damage of the oesophagus so it can last over a life time. I am going to go ahead with the surgery even though im anxious about it. I cant even begin to imagine what it will be like sitting down to a meal and not immediately be thinking what i can or cant  eat on this plate.

Im glad your op is working out for you and you can now start to enjoy going out over the summer without worrying.

13

Hi nikki 108...

You sound a lot like my predicament..I was lined up for another round of tests and all of a sudden had amazing results with medications.

I am still continuing with the tests and plans for Heller surgery as a back up plan for now.

Today was my first day of being 100% fully healed from medications.

Next trick is I am stopping all pain meds today..and will wait one week to stop my Nifedipine angina pain med that is what allows me to eat and drink for now.

My esophageus is starting to heal today and hoping it will open up next like the sphincter has.

But I am also a bad boy and used everything I could to dope my sphincter up to escape my achalasia attack that nearly killed me.

I am like you and have always lived with it my entire life..but extreme stress cause me to have attacks..and this was the biggest one that made me check in and get diagnosed...

Do NOT be fooled that my case is modest..mine was really bad and I would have died if I had not checked in.

I have continued what the nurses taught me in the hospital of using drugs and food to heal it..

I have a couple sayings of my own..

"Achalasia is a drug war..Not a scalpel war."

"Achalasia patients have the best drugs!!"

And...because I now get as high as morphein from eating food and drinking liquids.

"Drugs are my Food....Food is my Drug."

If I quit all med and sphincter stays open..I will cancel surgery.

Wish me luck..oh in 3 weeks the doctors do more tests and I will have documented proff of my curing myself with meds.

14

Well I sure would like to know what food and meds you've been using to cause such success.  Please share your method for healing.

15

Hi

I glad you have found something that helps you ease the symptoms of Achalasia, As i im new to researching the condition im not awear of the differant medictions offered.

you should post updates of how you are getting on so others can dicuss and decide with there consultants whats best for them.

I wish you all the best and hope things work out for you.

16

Hi Amy,

Thanks for listening to my story...

It has changed in the past few days..I am still on Day 3 of being fully healed. But the medicine I am using has some side effects that are scary and I am having to quit it..which was my plan anyways since I am now cured.

The medicine is "Nifedipine" and the side effect is you get higher than morphein and heroin when you eat food and drink milk.

Milk is essential in my battle too...I drink 1 gallon of milk by myself everyday...it is known to soothe heartburn and acid reflux..but it also soothes my sphincter to open up and helped heal it too.

If you do get a prescription for Nifedipine..please be extra careful..when you eat food or drink milk..your body will go numb and warm like the morphein..your head will get so dizzy you will have to throw up 10% of your food if you eat to much..the more you eat..the higher you get.

ONLY TAKE WITH DOCTORS CONSULTATION PLEASE EVERYONE!!!

I am thinking I had a mild heart attack yesterday from it..I ate too much and nearly lost all feelings in my bofy and blacked out.

So I am having to quit my secret "Ace Card" and prove I am fully cured.

This is only day 3 of being cured...the bet I have is my friends and family will support and make donations to my plans for an Axhalasia clinic in Colorado to help others.

When I have proven everythig and have the doctors medical records to back it up..I will begin my plans.

 

17

Hi Nikki,

I have updated my information in reply to Amy if you would like to know more.

But also EVERYONE remember my cure came from Nifedipine and could easily go away when I quit it...

And yes I know the doctors say this is NOT curable..but I am not one to listen to what I cannot do..I can do anything I set my mind too.

Please go ahead with your surgery..if my problems come back after quitting my new secret drug..I will be giving up too and will stop trying to be my own doctor and let them cut me up.

It will take me nearly being dead though to get me on that table though..

 

18

Thanks for sharing your strategy.  Please do keep us updated on your progress and good luck!  Amy

19

Thanks...Here is my proof...the first picture is me after hospital with no stomach....the second picture is today and you can clearly see stomach and muscles defined better showing the difference.

I did splurge and drank a six pack my first day of heal and it was my ultimate dream when cured.

I can eat anything and drink anything I want now..but if only I could handle the high from it and the nausea...

Today is NO MEDS...full cure Day 1.

20

Not doing so well after all for Day 1 no meds....

I woke up right before I aspirated last night...and the spasms and high are getting worse.

I am now passing out if I eat too much or drink too much milk or liquids.

The upper oesophageus is still pressing on my lungs and heart.

I sure do enjoy eating though...it is best feeling in the world...but I think I am going to have a heart attack if I do not go through with surgery.

Thanks Alan for the lead on Achalasia Diaries..that was the most powerful message I have ever heard..she hits it right on the head!!"

I will make all my family and friends listen to this recording so they understand our problems.

It is still up at BBS Radio..in search type Femi Martin..Achalasia Diaries.

I am going to keep trying to not take meds..but going forward with surgery after listening to this radio message.