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

Bridget Oyen is the ultimate foodie who had dreamed of culinary school since she was a teen.

But after more than a decade of suffering from a rare disease, 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 native had developed excruciating pain when she swallowed and would throw up multiple times a day.

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

For years doctors failed to diagnose her problem: ‘I was told “just lose some weight and you’ll be better.”‘ [Doctors] were never interested in looking deeper into anything.’ 

But after nearly 10 years of searching, Ms Oyen was finally diagnosed with the rare disease achalasia, which prevents the esophagus from passing food properly.

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

Because of the delay in treatment, though, her organ had already deteriorated beyond repair and at 30 years old, Ms Oyen decided to have her esophagus removed. 

Ms Oyen was 15 when she first began experiencing symptoms that included extreme thirst, chest pain and excessive burping. These later developed into throwing up multiple times a day and intense pain when eating.

She began to experience anxiety and her fear of eating became so intense she developed Avoidant Food Intake Disorder, which causes a person to severely limit their food intake, and she found maintaining her weight difficult.

Ms Oyen, now a banker, told Dailymail.com: ‘I was calling my mom in the middle of the night, crying. Saying to her… “What am I supposed to do? I can’t live like this. How am I supposed to eat?”‘

Achalasia is a rare disease that affects just one in 100,000 people. It causes the muscles in the esophagus – the tube connecting the mouth and stomach – to not contract properly, failing to send food down to the stomach.

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

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

Some may mistake achalasia as a reflux disease, but in patients with achalasia, food is being regurgitated from the esophagus, whereas reflux comes from the stomach. 

There is no cure for the disease and once the esophageal muscles have been damaged, they cannot work properly again. 

Typically, symptoms can be managed with minor surgeries that cut or widen the esophagus to allow food to more easily enter the stomach. 

Multiple surgeries left her with several scars across her abdomen

Ms Oyen’s initial symptoms were mild and she experienced extreme thirst, chest pain and excessive burping, and she was dismissed or misdiagnosed several times and her long road to get an answer was frustrating.

She told DailyMail.com: ‘Unfortunately that’s so common with rare diseases, and it just takes that one doctor who’s continuing their research and making sure they’re up to date on all the diseases in their 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 25 she was referred to a neurogastroenterologist, someone who specializes in nerve diseases in the GI tract. It was this physician who finally diagnosed her achalasia.

My Oyen said: ‘This was the first person to ask me what my pain actually felt like.

Ms Oyen was left with a large scar in her abdomen from surgery to remove her esophagus

‘I didn’t realize that when people called it heartburn it’s because it felt like fire. I just thought it was a cute nickname because mine didn’t feel like fire. It felt like I was being stabbed, and it‘s because I never had heartburn.’

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

The surgery helped her keep eating for almost a year – but her symptoms returned and she was referred to a new team of doctors.

However, pandemic lockdowns led to canceled appointments and delays in care. For months she couldn’t have the surgery that would let her eat and live pain free.

My Oyen told DailyMail.com: ‘I forgot how to be in that much pain. I had almost a year of being in more mild pain, and the pain came back so bad. I was an insomniac for most of that time.’

Because of the prolonged damage done 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 an esophagectomy.

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

Ms Oyen began experiencing symptoms at 15 years old and would have chest pain and pain in her throat when she ate

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

‘Essentially my stomach now acted like a big slide,’ My Oyen explained.

But the procedure left her with further complications and she developed inappropriate sinus tachycardia, causing a constant elevated heartrate, and her lungs filled with fluid, leading to permanent damage.

Ms Oyen’s recovery period was incredibly painful because her surgeons had to cut through a lot of muscle. 

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

She has been in physical therapy to rebuild her stamina and while eating is better, she sometimes struggles but is accepting that her life will always look this way.

Ms Oyen said: ‘I know that when I eat, it’s going to be uncomfortable. It might be painful, and it’s going to cause a ripple effect of symptoms throughout my body. But you can’t not eat.’

Due to her stomach’s new dual role, she has to monitor her food intake and can only have a quarter cup of food every 20 to 30 minutes, often finding a meal can take up to two hours to eat completely. 

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

From her ordeal, Ms Oyen developed post-traumatic stress disorder and said her psychiatrist and therapist are one of the main reasons she was able to get through the past year.

She has also found support amongst her friends and family and in online communities.

Ms Oyen added: ‘I’m lucky enough to have a great group of friends. My friend group shifted from a couple close people to a little community of chronically ill people. 

‘We might not all have the same diagnoses, but we all kind of get it. The chronic illness and disabled community is thriving on TikTok. It’s beautiful.’