Newcomer

[JaclynBelle]

Hi, my name is Jaclyn and I just joined this forum. I'm 19 and I live in New York City. Within the last month, I suddenly got slapped across the face with all the terrible symptoms of achalasia. I've never in my life had any problems eating or swallowing, nor has anyone I know. The fact that it's all so sudden and all so severe has left me no time to process what's going on. I've lost 17 pounds in about 6 weeks, and every day I feel weaker and more skeletal. Eating causes me great discomfort, pain, and nausea. I pretty much throw up everything I eat besides Ensure nutritional smoothies and water. I can't be social anymore, can't go to restaurants, and anytime someone buys me food I just feel so guilty that I'm wasting their money because I know it's gonna come back up within 15 minutes. My dad is being very insensitive about it. At first, he asked me if I was forcing it, implying that maybe I'm lying about all this and that I'm secretly bulimic. He gets annoyed when I eat any food in the house because he feels as though I'm "wasting his food" by eating it. He's gotten a little better, but it still really hurts to hear his comments when I have zero control over what is happening and the notion that I would intentionally cause this drives me to tears. I feel like I'm wasting away. I can't move, walk, exercise, or bike the way I used to. I tire extremely quickly and am plagued by constant fatigue. I'm essentially sedentary now, to preserve energy. I am scared and feel as though my life will never be normal again. Please tell me there's someone here who understands how hard it is to live like this while still trying to feel like a normal person.

[lucky77]

Hi jaclyn you might want to google cleveland clinic some good answers on there also wwwdrugs.com/enc/achalasia.... and good luck

[youthemanjlb]

Ok Jacklyn, I hung on to every word you said as I HAD Achalasia myself for many years until I got help. It can be defeated but what troubled me the most in your post is the lack of understanding that your father has about this disease and the lack of support you're getting from him. I'm not as lucky as you Jacklyn as I didnt have the support that you apparently have as everyone in my immediate family have passed away albeit for different reasons. For starters explain to your dad that Achalasia is an extremely rare disease that affects 1 in every 100,000 people a year. Tell him that any disease of the esophagus can be as debilitating as any health concern that you might have. As I have to leave for the day I'll be certain to get back to you later to explain my ordeal. And it was a very long battle. Regards till later

[chris_usa]

You are not alone. The hardest part is finding the cause to the symptoms, because only then can it be treated. You left how you were diagnosed with achalasia and by whom. This is not something that a person can self-diagnose. Only through Upper GI and manometry can achalasia be separated from other esophageal motility disorders or non-esophageal syndromes.

I hope that you are under the care of a gastroenterologist and have had the above diagnostic procedures performed. If not, that is what you need to do. Achalasia can be treated but not healed. The Cleveland Clinic is a fantastic location for the treatment of achalasia and other esophageal disorders. That is where I had my esophagectomy performed after many years of dithering elsewhere after a failed myotomy. If and when you have a diagnosis of achalasia, I can think of no better place to go for outstanding care.

This is a great asset for people living with all sorts of serious esophageal disorders. The first step any of us took in dealing with our varied issues were a diagnosis from a well-trained professional. I hope that has occurred for you but was omitted. \wc

[JaclynBelle]

Hey guys. Update: the doctor said it is not achalasia, which was very very very frustrating to hear because I was so sure it was achalasia and I just want a diagnosis so I can start treatment. I have all the symptoms of achalasia. It makes no sense. So now I have to keep living like this until we can figure out what's wrong with me. I'm meeting with my GI next week to figure it out. Thanks for all your support! I'll keep you posted.

[Ian1964oz in reply to JaclynBelle]

jaclyn, keep us updated. we have all had our issues. mine started off as achalasia at 16yrs old and in 2009 at 46 i had an Ivor Lewis Procedure. so keep on punching and let us know how you go.

[Cortex1 in reply to JaclynBelle]

How did he know it's not achalasia? You need to do a manometry test to be sure. Have you had that? Any other tests? X-ray, gastroscopy?

Keep us posted.

[Hidden]

There are other motility problems as well as achalasia, so your doctor might be right, but the route for diagnosis is to have a barium swallow test; an endoscopy and possibly a manometry test for the pressure at various points of your oesophagus. The diagnosis cannot be definitive until these are done.

You do need to find a way of keeping up your nutrition levels. Try chewable vitamin tablets. And keep hydrated with sips of water. Chew things really well, even when they would otherwise start to slip down the first swallow, and eat 'little and often'.

Watch the texture of food, especially apples, red meat, bread, rice and anything that would either be stringy and lodge at the bottom of your oesophagus; or things that will get blocked and cause a lump / bolus of food. Try manuka honey to keep your oesophagus / throat soothed. Keep an upright posture whilst eating, and move / jump around / massage your chest if things get stuck. Do not swallow the second mouthful until you know if the first one has got through OK into your stomach.

Some of your fatigue is perhaps from lack of nutrition. Watch any medication you take in pill form as it might lodge in your oesophagus and cause damage; go for liquid form or things that you can absorb under your tongue. I know it is chicken and egg, but moving around / exercise will probably help.

Try and keep the other bits of your digestive system in as good shape as possible eg avoiding constipation etc.

And good luck!

Alan

[JaclynBelle]

To all,

Update: I thought I wrote that I have had all these imaging tests and they all came back normal, including the manometry, which I just had done this past Friday. The barium swallow did show reflux, but my GI doesn't think that this is just a terrible case of reflux. He thinks there has to be more to it, because reflux doesn't usually cause people to so easily vomit everything they eat. I am meeting with him this week to discuss the next move. I will keep everyone updated! Thanks for your support and care. It means so so much to me. Wish me luck.

Jaclyn

[flower2013]

Sorry to hear about your health problem at such a young age. It can be quite tiring for you to loose weight and not have energy to stay fit. When you are feeling this bad, you will have to do gentle and sedentary exercises Have you tried liquidising soups and sprinkling a protein powder or drinking drinks with a high protein content? It is sometimes hard for the family to undertand what you are going through but in time I hope they will understand and perhaps you can steer them to looking at certain articles on some medical sites, which give them an uinsight what you are experiencing.

Never give up hope, but try and do something that cheers you up or take up papercrafting as a hobby. Seek medical advice and avoid stress where you can. hope things will improve.

[doingmybest]

hi my name is Scott and I do understand. although I suffer from something a little differentmy esophagus was removed and it changed my life.has anyone ever talked about Botox injections to relax that muscle that tightens up.I don't know if that's something they do for you but it's something they do for me and it worksbut again I had early stage cancer and that's why they removed my esophagus. you're so young I'll pray for you you just have to reach down deepand don't give up the fight. see many doctors don't be satisfied with one. and only go to the best of hospitals.I know it's like to move that wat I drop 70 pounds myself. please forgive my phone it writes what it wants sometimes. hang in there and I wish you the best

[Terri1962USA]

Hi. My name is Terri. I live in Ohio,USA. My Achalasia began at age 8 with your exact same symptoms. For 3 years I only kept down water and strawberry milkshakes. I weighed 80 pounds when Children's Hospital Cincinnati,OH diagnosed a birth defect. The birth defect was a blockage in my esophagus, LES lower sphincter. This is a very rare birth defect which can be present with or without Achalasia. The surgery was a Heller myotomy with a special muscle tissue removal for the blockage. Then the Achalasia progressed and at age 46 Dr. Rice at the Cleveland Clinic got involved and confirmed and diagnosed achalasia since age 6. Dr. Rice did my esphagectomy. But I want you to know that I saw over 20 GI doctors from age 11 to age 46 who told me I did not have Achalasia.

and every doctor from age 8 to age 11 told my parents 2 things: I was not sick and I was making myself sick to get attention!

So by the time I got to Children's I was the weight of a 6 year old and dying of malnutrition. The blockage, by the way, was diagnosed by a chest xray initially. You must get more than one opinion. I highly recommend that you get your second opinion from DR. Rice.

Keep a food diary with time noted from swallowing to regurgitation. Log how many times a day you regurgitate. Tell your GI doc you want to be evaluated for strictures,GERD, LES reflux aka silent reflux aka LPR

Go to the library and get the book Your Nutrition Solution to Acid Reflux by Kimberly A. Tessmer,RDN,LD call number 616.324. This book is the best acid reflex guide I have ever read.

Log your symptoms as yes or no as listed in this book before your GI appt.

And be patient with your dad or anyone who just doesn't understand yet. Men especially fathers cannot believe or accept illness like women can. Your dad does not want to believe his daughter is sick. Do not let his opinion deter you from your quest to get answers, get help and get this done immediately. Remember also you must find out what is causing this as well as treat the symptoms.

Good luck and keep writing.

[chris_usa]

Regarding previous post: Dr. Rice, chief of general Thoracic surgery at the Cleveland Clinic, has retired. He performed my esophagectomy at age 38 for failed and suboptimal myotomy (I'm trying to be nice). In one day, Dr. Rice and his colleagues correctly diagnosed my situation after over six years of bumbling by many other specialists. I am sure that the other staff in Gastroenterology and general thoracic surgery at the Cleveland Clinic are also top-notch, and that is the location that I would recommend for the most difficult cases. I do not know if Dr. Rice is currently practicing at all, but he is one of the few physicians or surgeons that I truly have respect for. \wc