Doctors misdiagnosed me for ten years – now I’ve had an organ removed and my life will never be the same

Bridget Oyen is the ultimate foodie who has dreamed of training as a chef since her teenage years.

But after suffering from a rare disease for more than a decade, she was forced to make the life-changing decision to have her esophagus removed.

Eating had become a traumatic event since she was little. The California resident experienced excruciating pain when she swallowed and vomited several times a day.

Mrs Oyen, 31, said: ‘It felt like I was swallowing glass. I love food. I’ve been cooking and baking since I was little. But food doesn’t love me.’

For years, doctors couldn’t diagnose her problem: ‘I was told, “Just lose some weight and you’ll feel better.”‘ [Doctors] were never interested in going into anything deeper.’

But after nearly 10 years of searching, Mrs. Oyen finally received a diagnosis: she has the rare disease achalasia, which prevents the esophagus from eating properly.

Bridget Oyen had her esophagus removed in a nine-hour surgery after being diagnosed with the rare disease achalasia

During her nine-hour surgery, doctors cut out her esophagus and reconstructed it using part of her stomach

However, due to the delay in treatment, her organ had deteriorated to the point where it could no longer be repaired. At the age of 30, Mrs. Oyen decided to have her esophagus removed.

Ms. Oyen was 15 when she first began experiencing symptoms, including extreme thirst, chest pain, and excessive belching. These later developed into vomiting several times a day and intense pain when eating.

She began to suffer from anxiety and her fear of eating became so great that she developed avoidant food intake syndrome, where a person severely restricts their food intake. She also found it difficult to maintain her weight.

Ms Oyen, now a banker, told Dailymail.com: ‘I called my mother in the middle of the night, crying. I said to her… ‘What am I going to do? I can’t live like this. How am I going to eat?”

Achalasia is a rare disease that affects only one in 100,000 people. It causes the muscles in the esophagus – the tube that connects the mouth and stomach – to not contract properly, preventing food from being sent to the stomach.

The cause is unknown, but may be due to a loss of nerve cells in the esophagus due to a viral infection or an autoimmune response.

Symptoms include difficulty swallowing, a feeling of having something stuck in the throat, heartburn, belching, weight loss, and chest pain.

Some people confuse achalasia with reflux disease, but in patients with achalasia, food comes back up from the esophagus, while reflux comes from the stomach.

There is no cure for the disease. Once the muscles in the esophagus are damaged, they can no longer function properly.

Usually the symptoms can be treated with a minor surgery to cut open or widen the esophagus so that food can reach the stomach more easily.

After several operations she was left with several scars on her abdomen

Mrs Oyen’s The initial symptoms were mild and she experienced extreme thirst, chest pain and excessive belching. She was sent away or misdiagnosed several times. The long road to an answer was frustrating.

She told DailyMail.com: ‘Unfortunately that happens so often with rare diseases, and it’s just necessary for that one doctor to continue his research and make sure he’s aware of all the diseases in his field, and not just the common diseases.

You know, when you hear hoofbeats [you] look for horses. You don’t look for a zebra, and unfortunately I had a zebra.’

At age 25, she was referred to a neurogastroenterologist, someone who specializes in nervous disorders of the gastrointestinal tract. It was this doctor who ultimately diagnosed her with achalasia.

My Oyen said, “This was the first person who asked me what my pain actually felt like.

Mrs Oyen was left with a large scar on her abdomen from the operation to remove her esophagus

“I didn’t realize that when people called it heartburn, it was because it felt like fire. I just thought it was a fun nickname because it didn’t feel like fire to me. It felt like I was being stabbed, and that’s because I never had heartburn.”

In 2018, Ms. Oyen went to a surgeon in San Francisco, where she underwent a Heller myotomy, a minimally invasive procedure in which doctors cut open the valve where her stomach and esophagus meet.

The surgery allowed her to continue eating for almost a year, but her symptoms returned and she was referred to a new team of doctors.

But pandemic lockdowns led to canceled appointments and delays in care, and for months she was unable to have the surgery that would have allowed her to eat and live pain-free.

My Oyen told DailyMail.com: ‘I had forgotten what it was like to be in so much pain. I had been in milder pain for almost a year, and the pain came back so bad. I was sleepless for most of that time.’

Due to the long-term damage to her esophagus, she was no longer a candidate for the minimally invasive procedures and decided to have her esophagus removed in a surgery called a esophagectomy.

During the nine-hour surgery, doctors cut away the esophagus and reconstruct it using part of another organ, usually the stomach. The top of the stomach is then stretched upward and attached to the remaining portion of the esophagus at the base of the person’s throat.

Ms. Oyen began experiencing symptoms at age 15, experiencing chest and throat pain when she ate.

The 31-year-old said she found comfort in her dog, Canada, during her ordeal

“Basically my stomach was now functioning like a big slide,” My Oyen explained.

But the procedure left her with further complications and she developed inappropriate sinus tachycardia, which caused a consistently elevated heart rate, and Her lungs filled with fluid, causing permanent damage.

Mrs. Oyen’s recovery period was extremely painful, as her surgeons had to cut through a lot of muscle tissue.

She told this website: ‘The pain was the worst pain I’ve ever felt. Just all over. My whole torso felt like I’d been hit by a truck… I felt battered and bruised. Even sitting up felt like I was using all my strength, especially at first.’

She is undergoing physical therapy to restore her stamina and although she is eating better, she sometimes struggles, but she accepts that her life will always be like this.

Ms Oyen said: ‘I know that if I eat, it will be uncomfortable. It may be painful and it will cause a domino effect of symptoms throughout my body. But you can’t not eat.’

Due to the new dual role of her stomach, she must monitor her food intake and can only eat a quarter cup every 20 to 30 minutes, and it can take up to two hours for him to finish his entire meal.

Ms Oyen added: ‘It’s hard to eat as many calories as my body needs when I’m eating in such small amounts. But I’m not losing weight quickly anymore, which I did for a while, and that’s scary.’

Her ordeal left Ms Oyen with post-traumatic stress disorder, saying: Her psychiatrist and therapist are one of the main reasons she has gotten through the past year.

She also finds support from her friends, family and in online communities.

Ms Oyen added: ‘I am fortunate to have a great group of friends. My group of friends has gone from a few close people to a small community of chronically ill people.

“We may not all have the same diagnosis, but we all get it. The community of people with chronic illness and disability is thriving on TikTok. It’s beautiful.”