Open Discussion on Primary Esophageal Alchalasia
Posted , 11 users are following.
This discussion is primarily focused on those who are living with Alchalasia. Even though Alchalasia can occur anywhere along the GI tract, for this discussion we will focus on primary esophageal achalasia.
Esophageal achalasia is an esophageal motility disorder, also thought to be an autoimmune anomaly involving the smooth muscle of the esophagus and the lower esophageal sphincter (LES.) It is characterized by incomplete LES relaxation, increased LES tone, and lack of peristalsis of the esophagus (inability to move food down the esophagus.) The failure of these smooth muscle fibers to relax, causes the LES to remain closed and failure to open when needed, (such as when swallowing.) This particular function is dependent on how it and the brain works in unison. People with achalasia will often have trouble swallowing or feel like food is stuck in their throat. This is also known as dysphagia. This symptom can cause coughing and raises the risk of nocturnal aspiration, the inhaling or choking on food and fluids. Many who aspirate may also develop what's called aspiration pneumonia, other bacterial infections, lung abscesses and scaring if aspiration continues for an extended period of time. The incidence of death due to asphyxiation has occurred but is relatively rare. Other symptoms one may experience is pain or discomfort in the chest that can radiate to the jaw. Hence, often mimicking the symptoms of a heart attack. Weight loss is common due to one avoiding food so as to avoid the symptoms they experience. Others may have regurgitation or "back-flow" after eating. But, this may be the result of other GI conditions such as GERD (Gastro Esophageal Reflux Disease.)
Diagnosis is reached with symptoms presented, esophageal manometry, barium swallow radiographic studies and endoscopy. If your GI Dr. or surgeon doesn't feel the need to do a manometry, as many dont, I would see another Dr. Manometry is one of the most reliable and diagnostic tools there is in the diagnoses of Alchalasia.
Various treatments are available, although none cures the condition. Certain medications or Botox may be used in some cases, but more permanent relief is brought by esophageal dilatation and surgery such as Heller Myotomy, POEM, and different surgical techniques known as a Fundoplications. The type of Fundoplication that you have is extremely important and should be based off of the type and stage of Alchalasia that you have and NOT that of what a particular surgeon may hold his expertise in doing. I can't stress enough the importance of doing your homework, researching this disease, reading about other's experience, and getting 2, even 3 different opinions from both GI specialists and surgeons alike. Again, one surgeon might propose a specific type of Fundoplication because that's what he/she does the most. It doesn't necessarily mean that it's the correct one for you. That's why I suggest 2nd opinions to see what you feel is best for you. Surgery can often be put off for awhile because you may be a candidate for less invasive procedures as mentioned. I.e. a pneumatic dilatation, Botox injections, the use of medications such as nitrates and CCBs (Calcium Chanel Blockers.) Even though these treatments have many disadvantages, the most being short active, they are other options nonetheless that many may prefer initially. If your surgeon tells you that you aren't a candidate for anything but surgery, that's just another good reason to see a second one.
Another procedure opposed to a Myotomy is a POEM. But, this is somewhat new and not every medical institution performs them. And not unlike all the rest, they too have their disadvantages. I personally chose to have Botox injections because I wasn't in a position to undergo surgery at the time. So far, several months out, I have had no symptoms from my Alchalasia whatsoever. And I was aspirating almost nightly, along with developing several episodes of aspiration pneumonia which landed me in the hospital a number of times.
I hope that everyone will tell their story. What treatment that may or may not have helped them, foods and beverages found through trial and error that either helped or hindered them and anything else that may help someone else out there who is afraid and suffering alone. This is a fairly rare disease and it's difficult at times finding someone to confide in and swap notes with. You never know, something you say may prove to be music to other's ears.
Stay Well,
DWJRN
2 likes, 177 replies
DJ-RN
Posted
I just wanted to take a moment and thank each of you for all of your comments and issues raised. We are all here to learn as much as we can about this disease, consider different treatment options and be supportive of everyone. I know that I have learned a lot from all of you and has given me many questions to run by both my GI specialist(S) and surgeons alike. Like I tell all my patients, keep a list of questions your unsure about and take them with you to your Dr's appointments. Because if you are anything like me, you will indeed forget to ask the one that's been burning a hole in your pocket. :-). Another thing to do is record your office visits. I use my iPhone's recorder everytime I go to the Dr. because often we will forget or be a little cloudy with all that was told us.
I started this thread for two main reasons. One, to learn all that I can from each of you, and to offer whatever I can that may benefit some of you.
Thank You,
DJ
Robert13450 DJ-RN
Posted
Hello DJ, you wanna laugh? You talk about bringing a list of questions. I went on Microsoft office and made my list of 22 questions. The first doctor that saw me didn't have answers so she brought in the big shot . His first words after looking at my questions were " are you my adversary " I said it all depends on what happens next. Half of my questions he couldn't answer either because there is no information on any patients with Achalasia who have had this done past 6 months. I was #2 here and there's a doctor in California that has done 5 so I'm somewhere in the first 7. I feel like someone fed me poison and decided to tell me afterwards. My feelings are that he doesn't deserve to be a doctor and I will do everything in my power to see he isn't. Even my pain management doctor when I saw him a few days ago told me to sue the sh_t out of him. Doctors don't usually talk about each other like that. I thought he was going to tear up when I told him the entire story. Oh, did I mention that before this surgery my spinal cord stimulator was working better than my first and was only just a year old. The first time I turned it on the stim doesn't work at all on my right side. I went to my Neurologist and met a rep there from Medtronics and they also agreed that something happened there to change it. After a year the leads are solid and are difficult to disrupt. Wish me luck the hunt is on.
DJ-RN Robert13450
Posted
Robert, I do wish you much luck and healing. If I were you I'd be P'd off as well. Dr's's are human too even though many of them feel they are superior to all others. He should have told you everything before he did that surgery. And if he mislead you I would seek legal counsel as well. You've been through enough and certainly didn't need all of this. Stay strong and positive my friend.
Doug
Janeeyre DJ-RN
Posted
DJ-RN Janeeyre
Posted
Janeeyre
Posted
DJ-RN Janeeyre
Posted
Oh, ok. I don't know about it.
Janeeyre DJ-RN
Posted
It's been rather quiet. I hope it's because everyone is enjoying the summer. Still, let us know how you are doing. DJ-RN?
DJ-RN
Posted
Let's see if we all can't list certain foods and fluids that's been found through trial and error to be easily digested and that helps go through the LES with more ease.
I've found that milk repeats and is hard to clear the sphincter. Carbonated beverages seem to help my medications pass through with ease and soft foods that are heavy and moist such as spaghetti and meat sauce does as well. Lite foods and those of fiber seem to take a while. Like toast, rice, wheat as in cereals and chips seem to stay in my esophagus. Anyone else have any that help or hinder?
DJRN
neil32387 DJ-RN
Posted
Sparkling water is a winner for me too; but I also drink plenty of warm/hot water as well, to keep the muscles relaxed. Sparkling water after dark or milk choc seems to work; especially if I let the choc sit in my mouth a short time and a noticable thirst signal comes.
Bananas in the morn to slowly wake things up; washed down with honey turmeric tea.
Soft bread and fried potato are no good, but very crusty bread is good for some reason. I think the nerves register its presence better. Obviously this may not be good for some folk! Best Veg is Avocado as very heavy and soft. For meat, I eat mainly prawns and chicken; always chewed well and drank with hot/warm water. I am sure I will think of more later...
All the best to everyone, and healthy karma
N
DJ-RN neil32387
Posted
Neil, Thank you so much for sharing that. I know many will find it helpful. This kind of information is great to share with one another. Sometimes one may have difficulty and can't put their finger on what it is that's causing it. Seeing a list of both good and bad food choices will come in handy!
DJRN
Janeeyre neil32387
Posted
I have found that toasted bread is always better for the digestion. It's easier to swallow, too, for me. In fact, soft bread is the most difficult thing to swallow of anything next to meat like steak. Never eat that, so am a cheap date. Although... I have no difficulty with prawns, so I might order them. I can eat chicken in small bits. Mincemeat is best. I miss the days when I could eat, drink, talk, laugh in the company of others--all at once without having to be careful.
DJ-RN Janeeyre
Posted
Sounds helpful. I could see how soft dry and lite certain foods such as rice, crackers and soft bread could be problematic. No matter what I eat it takes anywhere from 12 hours to 48 hours for it to make it to the stomach and squeeze through my LES. I'm having to change my eating habits and really watch how much I eat. My esophagus is bigger than my stomach and I never seem to be full. So that causes me to eat and drink more. I drink a half gallon of ice tea and over a half gallon of water a day as well. Which is good for me but all the tea. I need to cut back on it. I also have chronic calcific pancreatitis with four stones unreachable in the head of my pancreas. I had two surgeries at the Mayo Clinic in Rochester in 2010 for a 8mm stone that was occluding my main pancreatic duct. I've been doing well since they removed it. But, my chances for pancreatic cancer is much higher now that I'll always have pancreatitis. I lost my dad to pancreatic cancer at age 59, and his mother to complications of pancreatitis. So I have a lot going on. 😌
DJ
Robert13450 Janeeyre
Posted
Let me ask you a kind of personal question so if you don't want to answer I understand. Have you ever been out with friends and some not knowing about you health issue makes fun of the way you're eating, maybe the tiny bites or something along those lines?
I was once at a wedding and I woman I didn't even know looked at my plate and saw I had cut my steak into very small pieces and just started laughing and brought the entire tables attention to my plate. I thought at the time the best thing I could do was to get up and just give her a look I'm sure she's has never gotten before and leave the table as I didn't want to create a scene on someone's wedding day.
Janeeyre Robert13450
Posted
That woman who called the attention of the other guests to your plate was decidedly lacking in manners. I have never had such an experience. Only my sweet little granddaughter has told me I nibble like a mouse. But she is only six. My difficulty with swallowing has been a progressive thing. I have had my esophagus stretched several times, which helps for awhile. When I still lived in Los Angeles and dined with friends frequently, I did not have so much trouble. My friends there were mainly Persians, who have the greatest manners in the world and compliment people even on the street if there is something admirable about them. At first I found that strange, but soon came to recognize the guileless charm of such a custom. Now, for a variety of reasons, I live in a much different environment, surrounded by people with whom I have very little in common. There simply isn't much of anything to do, I would like to leave but stay for the sake of my grandchildren. So I have rather isolated myself and associate mainly with my two younger daughters and their families, who are also here on the edge of the desert. They occasionally give parties and, if I am there, their young friends would not likely pay any attention to my eating as it is usually buffet style. However, if someone were to make a comment about some small portions that I had cut up, I would merely tell the truth--that I had a condition that made it difficult for me to swallow certain foods unless I made them into little pieces. I can't see myself being so sensitive to someone's remark, even though there was a lapse in nice manners.
DJ-RN Janeeyre
Posted
DJRN
DJ-RN Robert13450
Posted
Robert, just ignore ignorant people like that. Janeeyre has had problems I think similar. Since my Alchalasia doesn't effect what and how much I eat, I've never had that problem.
DJRN
Cowgirluc Robert13450
Posted
No but if they would of done that to me I would of looked at her, her plate and see what she looked like and what she had on her plate and well come up with something 😊 yeah I'm a little onery and well only way I look at life and hide my pain.
DJ-RN Cowgirluc
Posted
People can be so rude and out of line. You do what you have to do and don't worry about what others think about what or how you go about eating!
DJRN
Robert13450 Cowgirluc
Posted
I would have said something but she was an old lady and I didn't want to cause a thing at a friends wedding. Karma took care of her, lung cancer took her the hard way.
My mom use to eat soooo slow and chew forever and my brother use to make fun of her but now thinking back she use to tell me she had trouble swallowing food but doctors had no clue back then, they barely know what to do now. She was always the last person up from the table and didn't care if you liked it or not.
Strangers look at us and make snap judgments, they know nothing about us and could care even less. I'm not going to stand and use my time to explain why I do or don't do something the way I'm expected to. I think if I see a person watching me eat I will cut everything much smaller than needed and watch their reactions. I'll let you know what time the show starts!!!
DJ-RN Robert13450
Posted
It never ceases to amaze me how so many people go out of their way to focus on someone else's actions while paying little or no heed to their own. These people are rude and judgemental. They need to start worrying about their own lives and problems and stop putting their nose in others business and what they may or may not do that differs from themselves. I would simply ignore them or give them the finger and not let it bother me.
DJRN