For Achalasia Awareness month Kaye tells us her story, in hope it can help others suffering from not just achalasia but other rare diseases. Kaye talks about how finding support was so important to her and how she looked at alternative therapies. Kaye says:
“Achalasia is a motility disorder of the esophagus which causes the peristalsis to not function properly. This description perfectly fits the sensation I felt, that food was stuck in my throat”
“Prayer support has been a huge part of keeping my psychological wellbeing as I go through this challenging time of facing a very rare condition. I am very thankful for the opportunity to share my achalasia journey.
Please join support groups including Achalasia Action to tell your story and share it with everyone, to counter the feelings of isolation”.
Please comment on and re-share Kaye’s story to increase awareness of this rare condition and unite for a rare swallowing condition. You can find out more information about getting achalasia diagnosed and about different forms of Treatment Options on Achalasia Action’s Website, Achalasia Action. If you need support on living with achalasia, contact us on info@achalasia-action.org or on 0300 772 7795. You can also join our Achalasia Action Facebook Page, and follow us on instagram and X (formally Twitter).
Kaye’s Achalasia Story
In 2022 I began to have trouble swallowing and could feel that something was wrong with the peristaltic movement in my oesophagus. I could feel that food was not moving down correctly and it felt stuck in my throat. Through some trial and error, I found that if I drank really hot liquid, took small bites, and ate very slowly, then I could eat small amounts of food. It wasn’t until June 2023 that I had a barium swallow test and the radiologist (X-ray doctor) said he knew it was achalasia. After the test, he showed me the picture of the distended oesophagus and the bird’s beak of the lower oesophageal sprinter (LES).
Achalasia is a motility disorder of the oesophagus which causes the peristalsis to not function properly. This description perfectly fits the sensation I felt, that food was stuck in my throat. As I ate, the food wasn’t entering my stomach but distending my oesophagus and increasing the pressure on the LES by not letting the food enter my stomach. I learned that drinking hot liquid allowed some food to pass into the stomach as it relaxed the sphincter.
After getting a diagnosis, it was only the beginning for my journey, and I started researching the disorder. But I wanted to research why this was happening and what causes achalasia. All the reports I had read said that we have no idea. One of the most important aspects of going through this process was finding online support groups for achalasia. One of the most devastating problems with any disease is the feeling that you are all alone, so it is important to connect with people on-line and locally to educate and encourage each other.
As a Christian, I prayed for direction and support as I reached out to many people dealing with a variety of life problems. I contacted Achalasia Action, and from there I began to participate in the monthly online calls and found many new friends from all over the world living with achalasia.
I was very fearful that the issue with peristalsis was also affecting my stomach and intestines which, in my case, turned out not to be true. The small amount of food and water which was passing into my stomach and intestines began to cause me severe constipation. So, after seven months of eating such small amounts of food and water, coupled with my inability to eat anything with fibre only added to more constipation problems.
After my initial diagnosis, the radiologist recommended further investigation with a Gastroenterologist. I got a referral and the consultant recommended interventions that could help with my symptoms. These included medication to help with nausea and surgical and non-surgical options including Botox injections, balloon dilation, or other medication which they told me I should use only for several months prior to surgical options.
I was also seeing a Chiropractor, who suggested that I should look for a physician who practices functional medicine, but I couldn’t find anyone locally. I think our bodies are amazing and can heal themselves with the help of practitioners who treat the body holistically, so I have accessed a variety of treatment options outside mainstream physicians. I have also tried a couple of other alternative procedures. One was Acupuncture, but unfortunately this didn’t give me the relief I was hoping for. I also tried a Vagus Nerve Stimulator, but again it didn’t produce any lasting effects. I kept looking into other areas as my health began to decline.
I then got a referral to the Digestive Disease Clinic associated with the Enloe Hospital services in Chico CA, where I began the long process of getting more testing done to confirm what the Barium Swallow showed. I was scheduled for an endoscopy swallow test (Manometry). The test revealed that out of ten swallows, I had ten fails, which confirmed that my oesophagus was not working at all in carrying food or liquid to my stomach.
Many months went by and nothing happened, except that my health was slowly declining and I was losing weight quickly. On 1 January, 2024, I went into the emergency room of the hospital because I had not had a bowel movement in ten days. A CT scan with contrast confirmed I had severe constipation. I found that using Senna, which is a natural herbal product that encourages peristalsis of the intestines, helped me begin to move the dehydrated poo out of my upper and lower intestines. My health continued to decline and I was back in hospital later in January, throwing up, and I was still only able to drink small amounts of water, which I would promptly throw up. So I was very dehydrated and the emergency room staff were having trouble starting an IV to give me fluids. That is the day I met Dr. Craig Aronchick, who walked into my room and offered me the outpatient Botox procedure. He told me the Botox would relax my LES and allow me to eat again after three days of a clear liquid diet. After three weeks I was eating normally and rebuilding my entire digestive system that had been asleep for seven months. I was also on a high-fibre ketogenic diet and my gut was healing very quickly.
I met Dr. Rasheed in February and talked about a procedure called POEM. I was able to ask questions and I decided to get the procedure done. Although the Botox was working well, allowing me to eat and grow stronger, there were no guarantees how long the Botox will last, whilst the POEM procedure is a more permanent intervention. My husband and I had a lengthy discussion with Dr. Rasheed and he answered our questions, and I scheduled the procedure for March. The procedure was a success and I am currently having no side effects of GERD (Acid Reflux) and is healing well.
Prayer support has been a huge part of keeping my psychological wellbeing as I go through this challenging time of facing a very rare condition. I am very thankful for the opportunity to share my Achalasia journey. Please Join support groups including Achalasia Action to tell your story and share it with everyone, to counter the feelings of isolation and possibly to help find a cure in the near future for this and other rare diseases.
