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My Story

Friday, April 3, 2009 @ 07:04 AM
posted by: admin

Before the year 2007, I had no idea what the word Achalasia meant.  It wasn’t until I was diagnosed with Achalasia myself that I became familiar with this term.  Achalasia is a very rare disease, and one that manifests itself in all different types of symptoms that range in severity from one person to another.  Everyone with Achalasia suffers from some form of pain and discomfort in the esophagus and has difficulty swallowing and eating.

The disease runs its course over many years, and some people experience mild symptoms, while others may develop very severe symptoms.  In my case, I struggled with more severe symptoms, including quite intense intermittent pain associated with esophageal spasms.  When a patient exhibits these symptoms of the disease, physicians label it “vigorous Achalasia.”

I have been afflicted with severe esophageal spasms and intermittent heartburn, along with many other symptoms associated with my esophageal problems that seem strange to me.  Sometimes I could not believe what was happening myself, but people that lived with me and saw me experiencing these symptoms knew that they were very real.  After years of treatments and tests under the supervision of a Gastroenterologist, my specialist diagnosed me with Achalasia on September 5th, 2007, after doing a esophageal scope and dilation, which had also been done several times before.  At this time he said things were different. My esophagus didn’t seem to have the ability to empty, and food was backed up and sitting in the bottom of my esophagus.

I knew I hadn’t felt well, and thought I would go home and look up Achalasia on the Internet. It was at that time that I panicked.  There was lots of terrible news about Achalasia on the Internet, along with different support groups where sufferers shared their horrible and painful experiences with Achalasia.  Reading their stories frightened me, and I definitely did not want to suffer in the same way.  I called my physician and asked if he was sure about my diagnosis, because he had sent me for further tests, and asked if there could be some mistake.  I was told that he was pretty certain of the diagnosis, and just required the tests to confirm it.  I remembered all the negative things that I had seen on the Internet.  A couple of friends of mine researched the disease on the Internet as well, and they also commented that Achalasia seemed like a devastating and serious disease.

I immediately became active to conduct as much research as I could about this disease.  I tried to find the specialists in the country that were best known and had the most experience to treat Achalasia.  A handful of physicians that specialized in treatment or surgical procedures regarding Achalasia kept coming forward.  I contacted all of them and found that each of them had different recommendations and different techniques in surgical procedures.  This was even more confusing, because I wanted to have one and only one remedy.  I also looked for diets and nutrition to see what could be done in those areas to help live with this condition.  Once again, there were differences of opinions, but of course, with swallowing difficulties, one thing was for sure, that it was easier to drink liquids, eat soft foods, and eat things that were moist. While researching, I discovered a list of foods that were known to trigger esophageal spasms in people with Achalasia.  I also found a list of foods to avoid and food to eat, but I realized that those lists were also conflicting.

Through my research and life experience with Achalasia, I decided to write a cookbook with tasty recipes that hopefully will be helpful to you.  Because of the difficulty in swallowing and using the force of gravity to get food from your esophagus to your stomach, I am trying to stay with lots of liquids, soups, soft foods, ground meat, and various forms of protein. Sauces are also beneficial to pave the passages of food for people who live with this condition.  This cookbook will also be able to be used for those who need to follow a soft food or liquid diet; plus there are recipes for your friends and family to enjoy with you.

One of the unfortunate side effects for people with Achalasia is that they begin to stop eating socially.  You can find them support groups, but they tend to like to eat alone or at home because of the eating problems that they wish to keep private.

I encourage anyone who has Achalasia or knows someone who has Achalasia to get the help they need, because there is medical support that can help the symptoms, even though the disease is incurable.  Most importantly, Achalasia sufferers must be positive and be determined to live the best quality of life they can have.  I can definitely tell you that Achalasia has changed my life in a big way; however, positive attitude and support has helped me to keep my outlook on life positive.

Karen Jean Matsko Hood

6 Responses to “My Story”

  1. MsCarter says:

    Your story is very informative and personal Karen. Thank you for having the courage to share your perspective. I realize it’s not always easy to do so, especially when others may not understand much about this ailment or even know what it is.

    Writing a cookbook to help others who suffer from Achalasia is certainly a way to turn something unfortunate into a positive. I applaud your efforts and look forward to trying some of the healthy recipes!

    All the best…

  2. Marcia says:

    I was diagnosed with Achalasia back in 1981.  I had 5 dilatations and finally in 1996 I had the heller myotomy (fundo) surgery.  Good luck on your journey.  It does get easier and you do learn to live with it.

  3. Lin says:

    I was diagnosed with achalasia in 2000.I had one dilatation that ruptured the esophagus. I did survive by sitting in bed without food or drink for 5 weeks until the tear healed. But after that even soft mushy foods were uncomfortable to eat. One of the pathologists showed me how drinking soda water got the muscle at the base of the esophagus to open to let his test marshmallow move into the stomach. After this I found that drinking a fizzy drink with food keeps the food from hanging up along the way and helps food empty into the stomach. I find the amount of carbonation and size of the bubbles is important as is the tilt of my throat when I drink it. It’s best straight from the bottle but over time I’ve graduated to fizzy drink in a glass when eating out.
    For some time a particular brand of ginger beer was most helpful and now I use a particular brand of sparkling water or soda water whenever I eat. Each brand is different and I’ve experimented to find the ones that are best for my swallow.

  4. dodo777 says:

    I have had achalasia now for about a year and it has changed my life. I don’t go out much and I suffer now from depression. This has changed me big time. I used to love my food now I just make smoothies and eat chocolate. I was told by my surgeon that another balloon dilation could be disastrous. so I worry now what they will do when it closes up again. Hellers myotomy isn’t an option as my gullet is to scarred. I live in South Wales, Britain.

  5. Shari says:

    I was diagnosed with Achalasia in 1990 when I was 6 years old. It took 8 months of emergency room visits for us to finally find a docter who diagnosed me with it. Needless to say, by the time I was diagnosed, I was dangerously under weight and dehydrated. I had also gotten a bad case of pheumonia from all of the vomiting, which caused asthma. Have achalasia as a child was very rough. I've had several dilations, the heller myotomy and the fundo. I had the myotomy and fundo before everything went microscopic so I was left with a huge scar on my side and down my stomach. I still have pain eating sometimes and I deal with chronic acid reflux, but nothing can be done because I'm still only 29 and docters are afraid to do anything that can make matters worse for me as I get older.  I have developed other mild autoimmune diseases, but I just take it in stride. I feel very blessed to be alive. As a kid I would be in a hospital room next to other kids who didn't have it as good as me. Some were waiting on livers, some had cancer. ut I am here today married to a wonderful man who doesn't care about my scars and two beautiful healthy children. So if you were diagnosed with achalasia as an adult count it as a blessing. Get whatever treatment you need and keep it moving. Not getting treated just makes life worse. You aren't dying you just have to eat slower. When you first get diagnosed you feel like you have a long list of things you can't do, but over time you realize that it's not as bad as it seems. Living with achalasia is all that I've ever known and it doesn't slow me down one bit. It's made me a stronger person that's for sure. I eat just like everyone else, it just takes me a little longer. I still eat popcorn, apples and all of those hard to digest foods, I just have to eat them early enough for me to digest it. And with plenty of liquid, of course. Your life doesn't have to be drastically different you just have to learn your body and have a positive attitude.

  6. Rebecca says:

    How can I get the Achalasia cookbook you wrote?!

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