Achalasia

Good morning im sue i was told monday ive got achalasia. Ive got bad chest pain which makes me have waves of nausea. What can i eat or drink ive lost 8pounds this week and im scared.

[brucemillar]

Sue

I am no expert here, others will come along who know more. Try not to be scared. You now know what the issue and what you are facing. So, you can now get help.

Eating very small portions and eating often is advice most given and probably most ignored ;ˆ) But it does work, albeit that it takes some adjusting to.

By eating small? I mean very small. For me, my limit is around two oat cakes with thinly sliced cheese at any one time. More than this and I will be in some level of discomfort. Remember, drink is also volume so should be treated like food. If you have a drink before you eat, it is filling the space that the food requires.

Keep checking back here as there are lots of people here who will reach out to help you.

Good luck.

Bruce

[Hidden]

Thank you even hearing back off 1 person has helped and i will do what youve advised straight away. Take care sue

[revdj]

Welcome to this Forum, Sue. I was diagnosed this past June, with Achalasia Type 1. This Forum is an excellent place to receive support, suggestions, information, etc. Eat very small portions, frequently is one thing that everyone on this site, with Achalasia, has suggested. When you sleep, be elevated. I bought a wedge-pillow and this has helped, because my esophagus is paralyzed and the only way food/drink go down is by gravity or by the food/liquid that is sitting in the esophagus putting pressure on my too-tight stomach sphincter muscle, to relax a bit to open and allow food/liquids to move down. I too have felt 'pressure' in the chest, and have the cardio-spasms that can happen in the esophagus. You are obviously under the care of a specialist, since Achalasia is a very rare condition. If you have concerns, questions, fears, please do not hesitate to talk to us on this Forum. No question is ever a 'stupid' question, as I've been told. There will always be responses. 'Alan,' has been excellent with providing information or 'links' where you can find information. I will be having a Heller Myotomy & Fundopilation surgery on Nov. 3rd.

[Hidden in reply to revdj]

thank you so much im so glad ive found this site as i felt so alone. Im def following all advice given. Thank you

[Hidden]

The chest pain may well be spasms of the muscles in the oesophagus. They feel dreadful and people will think you are having a heart attack. The spasms are caused either by a muscular / nervous reaction to the food getting stuck, by reflux, or by some other unknown cause. Some people find that eating a little bit of banana helps, but nobody knows why it helps. You can have medication like Buscopan to help with spasms, but quite a few of the medications have side effects (which probably seem minor in comparison).

Some people find drinking Coca Cola is helpful, or carbonated / fizzy drinks; but it is also true that some other people find this causes a problem! It might be that this helps clear the food passage in some way.

There is A Patient's Guide to Achalasia that you can download from towards the bottom of this page:

opa.org.uk/pages/achalasia....

Achalasia often involves the valve between your oesophagus and stomach being clamped shut (near your diaphragm). This means that your oesophagus gets overloaded and put under pressure. Peristalsis, which is the muscular action that propels food down into your stomach, does not work properly, usually because the nerve endings that drive the muscles are affected. So food then collects and ferments in your oesophagus and it is no wonder that you feel sick.

Try some form of relaxation technique if you can, because that tends to lower the level of the crises that occur. You can also try massaging your chest / diaphragm area or even jumping on your heels to try and get stuck food to go down. Avoid bread, rice or anything that might congeal in your oesophagus, and food that either has a stringy texture or skins (like tomato skins). Do not take the next mouthful until the previous one has passed below diaphragm level. Which sounds extraordinarily slow, but eating little and often is important.

Keep up liquid and soft food, and be careful about pills that might get stuck in your oesophagus and irritate the lining (or worse). You might ask your doctor to prescribe special nutrition drinks, or a pharmacist to give you medication in liquid form.

It is a bit unlikely that your GP will have had a case of this before, and other people won't understand what you are describing, but actually getting a diagnosis, which you appear to have achieved, is a major step forward towards getting things improved. There are people who get wrongly diagnosed with eating / psychological problems when they have achalasia.

The good news is that there are various surgical procedures that can be used that normally make things far better than they are for you at the moment; the not-so-good news is that you will probably have to manage your swallowing situation to some extent and be careful of what you eat indefinitely.

[Hidden in reply to Hidden]

what a great reply thank you so much for your advice ive wrote all your tips down

[K1ng in reply to Hidden]

My wife told me to tell other Achalasia suffers what we discovered that helps and is a non-invasive medical procedure. I started out suffering from Acid reflux for the past 10 years in the last 6 months my food wouldn't go into my stomach. I spent hours on hours spewing up my food and just by chance I found a cure woo hoo. I want to share with other Achalasia suffers. For the past month, this is what helped me open the lower oesophageal sphincter (LES).

Ok, I use this every day, every time I eat, everywhere I go, I carry this just like I do my cell phone, it's called a Terminal Zapper or the basic zapper they both work, man I'm free from spewing up all the fricken time so exhausting. Click on the link and buy one, It really works. Once you have the Zapper make sure you have a brand new 9-volt battery. Usually, with a new 9-volt battery in the Zapper, you turn it on then you hold the copper plates to the skin of your stomach where you feel the food is stuck, and with in a few seconds you'll feel the food slip into your stomach, it's awesome. Eventually when the food takes 5- 10 minutes to slid into your stomach change the battery. I always carry a spare. I know it works, good Luck and pass it on to other achalasia sufferers...... by the way I don't get a commission. I just want to help. Peace rawsynergy.square.site/

[revdj]

Sue, I have found this Forum to be an 'oasis' in the desert. As others have told me, 'we are here', so don't feel that you have to take this journey alone. We truly 'understand' what you are going through. I see that Alan has posted already, and that does not surprise me!! donna j.

[Hidden in reply to revdj]

Thank you im smiling the first time in 2weeks. My husband and young son dont know what to say or do but by showing them these messages might make them understand bless. Im 45 is this the right age for this sort of thing ?

[Hidden in reply to Hidden]

Anywhere between 5 and 85 years!

[revdj in reply to Hidden]

Sue, I am glad you are smiling! I was diagnosed in June of 2016. But in fact, was having symptoms - difficulty swallowing, cardio-spasms [which feel like a heart attack] etc., over the past 26 years. On Nov. 3rd, I will have the Heller-Myotomy & Fundopilation surgery and look forward to having a better quality of life, in terms of 'eating,' after the surgery. Yesterday, was a 'down' day for me; was having my own little 'pity party' in my head. Unless a person has Achalasia, they can't 'understand' what we go through, and how it hurts emotionally, at times, to be eating food that looks like baby-poop [ie pureed vegetables] while others are eating normal meals. Hopefully, the surgery will improve the ability to eat. I'm sure that others in this Forum also have 'down' days...don't think I'm the only one. My Thanksgiving meal this weekend, will come straight out of a blender! Gotta get that nutrition into the body...protein shakes, fruit shakes, Glucerna [like Boost]. donna j.

[revdj in reply to Hidden]

Sue, I just sent a post to you, but realized that I named a product, so my post may not be posted. I am glad you are smiling. Unless a person has Achalasia, they really can't 'understand' what we go through. I was having symptoms over 26 years ago - difficulty swallowing, cardio-spasms [which feel like a heart attack], etc. Yesterday was a 'down' day for me. I was having my own little pity-party in my head. It hurts emotionally to see people eating normally, while my meal resembles baby-poop [ie pureed veggies, etc.]. But we have to get the nutrition into our body - protein shakes, fruit shakes, supplements. I'm sure that I'm not the only one who has 'down' days, in our group here. I look forward to the surgery on Nov. 3rd, and the possibility of being able to eat a little better than I can now. This is probably the only time in my life that I've been advised by my GP to eat a 'high calorie' diet [for energy]. This weekend, my Thanksgiving meal will be coming straight out of the blender! By the way, I was diagnosed in June [2016], and I am 66. Keep smiling, eh, brings a smile to those of us who are down.

[Deepasaha in reply to Hidden]

I am having this since the age of 12 .I am 36 now. Had two surgeries.

[JosephR]

Take deep breaths, achalasia is a long-term problem. The symptoms usually do not get too much worse but there is an outside chance of developing Barrett's esophagus or esophageal cancer. These are remote if you have been recently diagnosed.

I am in the US I live about 50 miles from some of the best hospitals in the world. These hospitals train physicians from Harvard Medical School. And to put a side word, I am a retired/disabled Registered Nurse who worked with some of the nurses who have taken care of me through the years

I began to have real problems swallowing when I was about 13, I could not get water down. The the pain and "popping" noises I got what I needed down. I was really freaking my parents out. I went to one doctor, "it was all in my head" put me on Prozac, did not work. I then went to a second doctor when I was 23. This doctor sent me into Boston for testing. I had my first ph test and manometry test done. My finance' though it was funny that the clinic used a dab of cocaine to numb the nostril and I am walking around Boston with powder on my nose. I got the diagnosis, achalasia.

I again did nothing. I saw a new doctor in 1999. I was now 32 with a 2 year old son The new doctor asked if I was willing to try Botox. In the US we need the insurance to get everything approved. I had the Botox in the first week of 2000. Later that night, I got a call from my doctor and he said we have to meet. I met him at a local coffee shop. My esophagus was as wide as my stomach, and was shaped like a backwards J. There was no muscle contractions of the esophagus at all. I was sent to a specialist and surgery was scheduled for February 29, 2000.

My wife signed the consent forms as they did not know if they were going to use my stomach as an esophageal replacement or piece of my intestine. The stomach replacement was preformed. In the sixteen years, I have had issue after issue. 5 feeding tubes, lost over 100 pounds, a gastric bypass due to large amounts of bile and in 2014 a very large hernia repair intestine behind my left lung and then cleaning out of my chest cavity of scar tissue.

This has prevented me from going back to work. US has Social Security Disability but it is only 45% or so of what I would be making as an RN.

MY ADVICE TO YOU: Don't sit on it. Achalasia will not go away on it's own. Do not let them pump you full of bad medications and bad advice. If a doctor approaches yo and talks of a Nissen Fundoplication, jump at the chance. Small surgery compared to esophagectomy. I was told that if I had not waited, I could have had a Nissen done in the early 1990's but I waited and over 20 years of no treatment ruined the musculature of the esophagus.

Best of luck

Joe [e-mail]

[suzy28]

hi i to have achalasia had it 11 years now had load of tests all i can say is try not get to stressed i no it hard to say but it makes this condition worse try eat small amounts and drink water with it i live on soups and when get the chest pain find hot water bottle helps also if you on fb there is a site called achalasia support group its a closed group so you can request join it its got loads of people like us who have this condition and you can ask for advise its helped me loads hope this helps

[Achalasia101]

Hello all, this thread hasn't been active for a while but was useful to me so thought I'd share the foods that have helped me on Achalasia. I found peppermint or licorice tea helps to relax my oesophagus, I'm drinking a lot of complan and ordered some special medical nutrition drinks called Ensure (expensive). Weirdly I can eat as many packs of Pombears as I like. Soup is good. Salad leaves v bad. Any solids other than pombears v bad. Yoghurt fine slowly. It's different for everyone but my discoveries might help someone out there! Good luck x

[Melman82]

Hi all, I've found your replies really helpful for what my Mum's going through right now. She's only able to eat soup and we don't know much about Achalasia at all, but reading this helps.

I thought it was bad her having searched for answers for 2 years let alone 10 or even longer...some of the doctor's she's been to have left us shaking our heads - one gave her a script for Viagra and she walked out. It definitely feels less lonely hearing your stories

Edit to add - was anyone's chest pain initially labelled as just angina?

[laccfitz]

Hi,

I have been getting most of the symptoms of achalsia for well over a year now. I was convinced it was my throat/sinus for the most part as I am currently living in Malta which has a terrible pollution problem, and it only started when I moved here. I start to realise a month or so ago that food was getting stuck in my oesophagus and weirdly enough things like milk shakes would be the worst. I work in an office that has constant AC on so this is usually where I am most affected. I was forced to work overtime around two weeks ago and this put a serious stress on my symptoms, eventually resulting in lumps appearing on my neck/face/shoulder area. I went to my GP and he gave me a course of anti biotics for a skin infection, and after 2 weeks it didnt get better so I went back and he prescribed another course of anti biotics .

Here is where my biggest issue lies. I have gone to 3 different GP's, 4 different ENT doctors and even a gaestrontologist over the last 3/4 months. Each time I am told something different. whether it be complications from heartburn/ environment/ allergies but none of these explain my symptoms and the constant relentless stress my body is going through.

From reading first hand accounts of achalasia, I can confirm I have had every symptom apart from weight loss and that is because I can still eat food at the moment, as long as it is small frequent meals that are easy to digest. I have also noticed that after I play competivie sport I will inevitably get stomach pains/cramps every time over the last few months. My Mom also has Multiple Sclerosis and her brother and dad both died from oesophagus cancer.

I am on my last legs ready to give after spending 100's on different doctors, explaining that I know something is definitely wrong with my body. To just be told bullshit explanations without even doing one legitimate test.

Can someone please advise what I should do next and what my options are?

Do I just go in and demand certain tests cause if I dont push for it myself I dont think they will never do an actual test.

Thanks,

[bronydd]

Hello so sad for you I have also got Achalasia and have found eating and loss of weight which really worried me, still loosing but I am managing to more small complete meals. I have Acupuncture which helped but that has stopped because of the virus, what I have discovered is the art of Jin Shin Jyutsu which I found on line and am sure it helps, stress is one of my enemies which causes me to be very sick because my sphincter closes and i have to make myself sick and only what doesn’t enter my stomach comes back which in my case takes the pressure off my chest, maybe what I do is wrong as I haven’t been back to see my specialist because of the virus. Maybe this will help. Try and look up the touch of healing by alice burmeister good thoughts AJ

[Pepita933]

With achalasia the sphincter at the base of the esophagus-top of the stomach often scars over. This makes weight loss inevitable. (Food has a big problem getting through. The correction to this is a surgery, for me that cut the sphincter vertically so that food could pass through again. I think you will discover some big changes to your diet. Soup and smoothies are your friend. You can up your protein content by adding a protein powder to your smoothies. For me corn with the coating around the kernel isn’t good for me. However corn products, corn tortillas, chips with corn base Cheetos, are great. Bread is an issue, but I’ve been okay with Oat nut bread in limited amounts. As they’ve said eat small meals, and for me think wet foods. Chili, stews, lasagna you get the idea. Meat alone like chicken or roast beef can start problems for me. Chicken is almost always too dry.

Fish is a great option. I just can’t stand the taste of canned tuna on repeat. Start paying attention to what works for you and what doesn’t. For me salads, no. Anything light weight like lettuce keep coming back up. Al dente in vegetables, not good for me. You are going to belch. It is the pressure of the stomach and esophagus you can’t change it.

Heart burn happens. Elevate the head of your bed.you can try a wedge pillow, but elevating the head of your bed is better.

I’ve run on..sorry!