The story of Narissa
For many years I was struggling with swallowing and eating different foods. I thought that it was just my taste in foods changing. I stopped eating spicy foods. I stopped drinking fizzy drinks. I stopped enjoying most takeaways. Then in 2021 things started becoming worse. I could only eat small amounts of food and then feel ‘full’. By small amounts I mean half a sandwich after not eating all day. Slowly I began eating less and less. I went to my GP and tried to get help. They kept telling me I had GERD or acid reflux. Medications to treat these issues had no effect. I started having issues sleeping because I was aspirating fluids through my nose and choking almost nightly. I had an endoscopy in September and samples were taken for biopsy. Everything came back normal. By November of 2021 I was barely eating. Then came regurgitation. They prescribed me anti-sickness medication, which didn’t work. I went to the GP and asked to be sent for tests. The GP tried to insist I take anti-acid medication and refused. The lady was shocked and I explained that I took it for 4 months and it didn’t help at all and I refuse to add things to my body unnecessarily. This lead them to scheduling me for a barium swallow test. At this point I was aspirating every night and wasn’t eating or sleeping much. Christmas came around and I ‘ate’ the dinner my sister made. I only ate a quarter of the roast dinner at lunch time. By the time I went to bed, I had regurgitated the whole lot. I tried again the next day and same thing. So I moved on to trying soups. on December 29th 2021 I had a barium swallow. I hadn’t had anything to eat or drink that day. I did the test, which involves swallow an isotope drink that the x-ray picks up. The technicians looked a little concerned but told me the results would be with my GP within the next 2 weeks. That day I tried to eat soup and ended up regurgitating that and all the barium liquids. The next day I get a call from my GP advising that I have been put in for an emergency referral to have a manometry test. This is where a scope is passed through your nose into your digestive tract and they measure the pressure in your esophagus to determine your ability to swallow. At this point I wasn’t able to swallow and keep down soups and was drinking around 250ml of protein shakes a day to keep my body alive. I had lost in the region of 15kg of weight in just under two months. The test involves you swallowing fluids and eating biscuits. Sounds easy but I can tell you that it was a really difficult thing to try to do. I only managed half a biscuit during the test. The test was appearing normal until one of the technicians noticed that my lower sphincter muscles wasn’t actually opening but instead pulled up over my esophagus mimicking the action of the muscle opening and food going into the stomach. They even looked at my swallow test and it showed the tell tale signs of achalasia, being the birds beak appearance of the esophagus. The technician said she hadn’t seen anything like my case before. I requested a referral to a dietician to try to get some help with adding calories and nutrients to my diet. The NHS is great, but so heavily under pressure to meet demands, especially after the pandemic. So my referral came through and was scheduled for March 2022. I had to wait almost two months to even talk to a dietician. I tried to go private but no dietician would take me on as a client with my condition, because they didn’t know what it is or how to help. I had a really massive scare one morning about 2 weeks before my call with the dietician. I was in bed and woke up feeling absolutely freezing cold and couldn’t get warm. My teeth were chattering but my body was warm to the touch. My fiancé was scared and was on the verge on calling an ambulance when it suddenly stopped. After talking to the dietician, she conferred with the specialist and I went into hospital to be put onto a feeding tube. At this point I had lost almost 20kg of weight and wasn’t getting enough nutrients. The dietician was afraid of re-feed syndrome after treatment and wanted to get ahead of that so my body would handle the surgery and recovery. I had looked up wait times and read that the surgeons were prioritizing cancer patients and people with serious life threatening conditions. I was in hospital for a week getting my body settled and adjusted to having what it needed. During my time there I met with a surgeon and was given a timeline for surgery being end of April 2022. I was shocked but happy. In hindsight I think I was in worse condition than they told me because of how quick I got the surgery date. I lived with a feeding tube for just over a month before I had POEM surgery to cut through the sphincter muscle and allow food to travel to my stomach. Surgery was a success and recovery was fairly straight forward for me. Now I am able to eat almost everything I could before. I still struggle with some foods and always need fluids to help move the food through the esophagus. My condition is incurable and degenerative. I will live my life knowing that I will have more treatments in the future and will always struggle to eat. This condition has changed my life and my perspective on everything. I am still working through the trauma of being so sick. It will be something I live with and work through everyday for the rest of my life. Eight to twelve people per one hundred thousand people a year are diagnosed with achalasia. There is very little research into what causes achalasia. There is no cure and doctors only treat symptoms to help give people some quality of life. It is believed achalasia is caused by viral infection or an autoimmune condition in which the immune systems attacks healthy cells, tissue and organs. I am lucky in that I don’t have so much trouble eating and drinking. Many people who have the same condition suffer for longer or far worse than I do. Diagnosis is not easy as the symptoms are so similar to other conditions.