Not being able to burp and the available medical treatment

After being contacted to help raise awareness for a relatively newly discovered condition called Retrograde Cricopharyngeal Dysfunction (RCPD) - the inability to burp - our communications officer Jess Shankland realised that the meeting she was about to have could be life changing, as she explains below.

Burping is typically considered a rude thing to do, so the fact that I don't burp has never been an issue. In fact, I always saw it as a bit of a flex, that was until I was approached by Mr Yakubu Karagama, an internationally renowned laryngologist at Guy’s and St Thomas' NHS Foundation Trust, with a specialist interest in raising awareness around the condition RCPD - the inability to burp.

Naturally I had a lot of questions to put to our expert Mr Yakubu Karagama [pictured]. This is what he told me:

What is Retrograde Cricopharyngeal Dysfunction?

The inability to burp is a disorder that has always been there, but the connection between the disorder and the symptoms it causes has only been relatively recently discovered.

There is a treatment for the condition, but it is not NHS approved yet because lots of doctors don't know about the condition, or don't consider it to be a problem. Some patients have even been told they're lucky they can't burp because burping is seen as a rude thing. This is the difficulty we face trying to get the condition recognised on the NHS. It's currently being seen as a social issue, but it's not a social issue it’s a health issue.

Burping is a physiological phenomenon that needs to happen, when it doesn't happen the built-up gas causes uncomfortable symptoms.

How big do you think the problem is? 

It’s more common than we think. It's difficult to know the full scale because lots of people don't even know this condition is causing their discomfort. Almost every patient will say that they never knew this was a problem.

What are the symptoms of RCPD?

An inability to burp can cause:

• A gurgling noise in the throat.
• Painful vomit.
• Excessive wind.
• Emetophobia - fear of vomiting.

This condition can have a significant impact on a patient’s quality of life. I've had patients who had to stop going out to socialise because when they do they experience pain. 

Some people get mild symptoms while some spend a lot of time in hospital because of the severity of their symptoms. They have endoscopies and ultrasounds but because the doctors don't recognise the gas as a problem, even though the gas is shown on the scans, they don't pick it up. 

I don't have severe symptoms so it's not something I thought was issue - are there many people in the same position as me?

A lot of the patients I have seen - and sometimes their doctors as well - didn't realise this was the cause of their problems. At the moment many people are discovering they have this condition through online forums and social media where patients are sharing their experiences. I have also given lectures to doctors, so it's being gradually accepted now. 

How often should we burp?

It depends on diet. Fizzy drinks will cause more burping and so will certain foods. There are two reasons why gas forms in the stomach after eating: 

1. As you eat you swallow some air which needs to come back out.
2. Digestive enzymes break down the food and drink you consume and this process releases gas.

The easiest way for gas to be released is by going up because the stomach is not far from the throat. For people that can't burp that doesn't happen - the gas goes the other way and they experience bloating and some patients complain of excessive wind. 

Fizzy drinks can give me painful hiccups, could that be a symptom?

It's one of the common symptoms. The reason people have bad hiccups is because gas gets trapped in the stomach right under the diaphragm. The gas irritates the diaphragm, and this can cause very painful hiccups.

How is the condition treated? 

In 2016 a treatment was discovered and Dr Bastian, an Ear, Nose and Throat specialist in Chicago, became the first one to start treating patients for this condition. I was the second in the world to start treating patients for RCPD and the first to start treating people in Europe.

The treatment is very effective with minimal side effects. It uses Botox to temporarily paralyse the muscle, so when gas comes up there's no resistance and the air can pop out of the muscle on its own.

With this condition there is nothing wrong with the muscle, it’s the neural connection between the muscle and the brain that creates the problem. For about 80 to 90% of patients, just one injection will end the problem. With this procedure I've seen people re-learn how to burp.

After the injection, people do micro burps to understand what it feels like and it clicks. So after three months when the Botox wears off, the brain knows what to do and can keep the burping process going, which is very interesting.

With this treatment the bloating and gurgling noises can all be resolved and lots of patients say its life changing. They feel like their body has been upgraded completely. For many patients they see improvements in their quality of life - they can exercise and socialise more. 

Why are you interested to research this condition?

Part of my special interest is swallowing. I treat swallowing difficulties and the muscle used in swallowing is what causes the inability to burp. The muscle called is the cricopharyngeal muscle. I'm used to treating this area, hence I picked up on this RCPD because it's the same muscle – put simply it’s the reverse of the swallowing difficulty so it’s easy for me to understand.

I sometimes experience breathing difficulties when exercising. Is exercising difficult for people with RCPD?

People find they get breathless when they exercise. Deep breaths when you run force the stomach to push against the diaphragm which means the lungs cannot expand fully to give you more oxygen during exercise. 

What’s the plan to get this recognised by the NHS?

I'm hoping that one day this will be more readily available. I am working with our research department to apply for research funding, but it's difficult when approaching industry because they've never heard of RCPD and they're often sceptical. There is lots of literature available on this now though, so I'm working that with my research manager we will be successful in our application. The funding will key to helping us gather the evidence we need to show that this is a serious health issue for many people and it needs to be addressed with treatment.

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Yakubu Karagama is an internationally renowned laryngologist and leads the voice, airway and swallowing service at Guy's and St Thomas' NHS Foundation Trust.

He is the founder and director for courses in international phonosurgery, laser laryngeal surgery, transnasal oesophagoscopy (TNO) and dysphagia in Manchester and London.