Sadie Mills and her husband Les Jones had the world at their feet. At the age of 24, Sadie was the picture of perfect health and life was great….until what she thought was heartburn. Her and Les could have never guessed that their lives were about to be turned upside down. Here are a list of some of his personal symptoms and a brief version of the path Sadie took to get a final diagnosis.
Some of the symptoms he showed over time:
- Awoke in the middle of the night with what felt like a stab to the chest. Her throat and mouth was on fire. Taking a drink of water, her symptoms were relieved. She thought it was heartburn and she felt normal the following morning.
- Over the next few weeks, the heartburn pain kept coming back. She took over a half bottle of antacids a day but nothing seemed to help. She figured it was due to some weight gain.
- Then one day she felt the pain come on, she became pale and sweaty. There was a pressure in her chest as well as burning and tingling. They knew something was going on. For a moment, Sadie thought she was having a heart-attack. The doctor ran tests but there was no cardiac issue. He ran a blood test and believed it was an ulcer. Three weeks later the test came back negative.
- The attacks seemed to intensify. Then only night she woke to feeling as if she was drowning…as if someone had poured a bucket of water over her face. She was choking and coughing. She realized she had thrown up in her sleep. The next day her doctor told her to not drink anything after 7pm to ensure there was nothing to come up. But a few nights later she awakens drench in water. However, her doctor still can find nothing wrong. He assures her it was stress. Les wasn’t sure about the doctor’s diagnosis.
- Only getting a few hours of sleep a night, Sadie was becoming tired and lethargic. Soon she noticed that when she ate she got full quickly and the food or water would start coming up in her mouth. Telling her doctor that she was unable to eat anything, was hungry and unable to hold anything down. Once again, he told her it was her doing…all stress related.
- 6 months since the onset, Sadie started to get loud hiccups…several times a day. Looking it up on the internet she found people can get them with stress. So, she went on.
- Then a new symptom arose….feeling like she needed to burp but couldn’t, she started vomiting foamy bubbles. Her doctor told her it sounded like she had an eating disorder. He told her it was probably psychological…that a lot of bulimics do that. Les was angry and tried to explain to him.
- Another 2 months went by and Sadie had lost almost 35 lbs. She was weak, unhealthy and her hair was starting to fall out. Knowing that if they didn’t do something, Sadie was going to die. Her doctor sent her to Dr. Timothy L. Huggins, gastroenterologist from Parker County Gastroenterology. With the symptoms of vomiting, reflux and the inability to swallow, Dr. Huggins ran a few more tests and finally Sadie was able to get some answers.
Final Diagnosis:
- Achalasia – rare disorder of the esophagus. For healthy people the esophagus muslcles relax and contract to move food an liquids down into the stomach. For people with this disorder, the muscles are unable to do the job and nothing is able to pass through to the stomach.
What is ahead for her:
- Luckily she was diagnosed in time, before it got worse. It is not curable, but Dr. Huggins believed that by injecting botox into the area, the muscles would relax and she would be able to eat again.
- Follow up treatments would be needed every 4 months or so to keep her symptoms in remission.
2 years after the diagnosis, Sadie had fully recovered and was living a full and healthy life. Great lesson in this….if you are not getting answers, see a specialist who can get them for you. It is your health and you are an active player in what is happening to your body.
I can not tell you how wonderful it was to find this show!! my sister actually saw it and told me about it. I thought I was going crazy! I have had doctors give up on me. my family was suffering from me being sick! I’m hoping soon to have relief!!
Melanie
My son was diagnosed at age 12.He has had two operations and at age 19 he can now eat whatever he wants.He suffers with severe spasms from this disease and has taken every narcotic on the market with no relief. If anyone would like support or just talk about this horrible disease contact me. tcooper1973@cox.net
Something to keep in mind about this disease… everyone is different, and botox doesn’t work for many. Please find a specialist if you have any similar symptoms, keep fighting for a diagnosis, but find answers that work for you. The comment that Sadie “fully recovered” is a bit of a misnomer, as you can’t recover from achalasia. It’s something we live with for the rest of our lives. Treatment varies, but the disease doesn’t go away.
I absolutely agree. When I was wrapping this recap up, I didn’t realize I snuck in “fully”. My intention was to point out that she was no longer in the distress she had been in. As with any disease, there on-going issues and needs and every patient is a special case. This show takes one person and shows their journey alone. I am certain there are many stories out there that differ…I only hope that each person was able to find help.
I just wanted everyone to know that Botox is not a good long-term solution for this disease. There is a great Yahoo! group where you can get more info, but the Heller myotomy with partial fundo (wrap) is the only tried and true method of returning to a somewhat normal life after you’ve gotten so bad you’ve started to lose a lot of weight. Everything that doctors try leading up to that (stretching and botox are two examples) tend to be short-term solutions and “wear off”.
I absolutely agree Jacquie! The doctor didn’t even speak about the operation as an option until I brought it up. Sad to say but I believe that they would like more patients to try the botox and dialation to fill their research papers. Since the disease is so rare, I am sure there’s not enough conclusive research out there.
When I finally met my surgeon he was quite impressed that I bypassed the less invasive options by choice. He told me and I quote ” If you were my sister, I would recommend the operation and not to put yourself through the frustration of the temporary relief”.
I know everyone is different, but I cannot fathom putting myself through the frustrations of botox or dialation.
i just want to say that i have achalasia, went through exactly what this girl did, the doctors kept saying it was all in my head, till i lost 80 lbs in 3 months, finally after not even being able to keep water down for more the a minute went to the er, they ran a million test, 10 days later a dianosis. 5 surgerys later i am doing ok. still not perfect but i can try to have a semi normal life. this condition isnt easy to cope with and people just dont understand, and never will unless they experience it for themselves. Drowning in ur own spit isnt a great way to be woken up, its an embarrassing condition when ur trying to go out and u have to leave the table with ur friends just to hope to make it to the bathroom to throw up. i didnt have the support of my family so i went through this alone. i hope that this gets better for all of u, still surviving… shannon
Thanks for sharing Shannon.
I have Achalasia too. I was diagnosed 20 years ago (I was 17). I’ve had 2 surgeries which helped some what. Warm water when I eat helps too. It’s frustrating to eat and then panic when te foo sits. I hate going out to eat with people who I don’t know very well. I am so excited to get on this forum and meet people with Achalasia too. I feel like no one knows what I go through.
Hi Jen. Thanks for coming to The Daily OWN and sharing some tips. We are certain that they will help others who are suffering from the same disorder. Best wishes, Patricia & Paula
I have Achalasia and cannot begin to say how excited I was when my mom saw the show. I’ve been battling this for 20 yrs (since 17yrs old). Ive learn how to deal with it. What works and what doesnt. Best of luck to anyone just going through this too. Achalasia is tough but manageable.
I couldn’t believe what I was hearing as I was watching this episode. The more Sadie spoke and explained her symptoms, the more I felt like I was watching myself tell my own story.
I also lost lots of weight and felt lethargic and mentally slow. It was affecting my work and studies. I was literally living off of about 4 bottles of Boost and a couple chocolate milkshakes a day. NOTHING else would go down. When the liquid would go down, which was for only a few hours at a time, I would drink as much as I could. It was like I had a window of opportunity to drink the Boost and milkshakes for about 2-3 hours first thing in the am and then late at night.
I went through several tests that also came back negative. FINALLY after living with this disease for 4 years, it was diagnosed as Achalasia. The diagnoses was made after I performed a 24 PH test and a motility test. The worst test I ever had to do and I swore that if it also came back negative that I was done with all the tests, no more!
Luckily it came back with a positive diagnoses. From there, I did my own research online on the various treatments and although the specialist recommended I start with balloon dialation, I demanded that I have the heller myotomy nissen fundoplication operation. I knew the botox and dialation treatments were temporary and would cause scar tissue, further complicating the inevitable operation that would be required down the road. I met with a Thoracic surgeon after a few months and he agreed with my decision and I felt there was no point in delaying the in evitable and I know I am healthy enough to get through an operation right now, I don’t know what my health will be like years from now when my body stops responding to the temporary treatments.
I had my surgery last November and knock-on-wood, I am eating well. I do have to make sure I have liquid with my food to help for lubrication if the food is dry (bread especially). I am so pleased with the results and hope that they last long-term!
I am pretty much back to my old weight and enjoying my social life again. It’s amazing how much food and drink play a part in your daily and social life.
I wish this disease was known more so that sufferers could get a fairly quick diagnoses. I also wish the medical field knew what causes this disease. Some think it’s an autoimmune disorder, but nothing is conclusive. Regardless, I am glad there are some treatments options. Based on my personal experience and with talking with the surgeon, I am happy that I chose the surgery and am proud of the 5 little scars that I was left with. They remind me of what a strong person I was for 4 years being deprived of one of our human basic needs.
All the best to my fellow Achalasia ‘friends’. I hope you find relief, no matter which road you take.