US-based Isabelle Edwards, who is known as the Diabetes Diva, does not let diabetes control her life. Also, a keynote speaker and a type 2 diabetes advocate for American Diabetes Association, Isabelle (54) has been suffering from several episodes of severe gastroparesis since she was diagnosed in 2009. She narrates her ordeal of managing diabetes and gastroparesis in an online interaction with Happiest Health.
“You could be feeling perfectly fine and all of a sudden, the back of your throat starts to water, and as you try to swallow the added saliva, your joints start to tighten up and you feel like the tin man in the rain. And now you are starting to sweat. Then you feel a wave come over you and you start to have deep belly spasms as your food drives up your throat. You stand there helpless, not being able to speak, wanting it to stop; you just stand there like a cat trying to cough up a hairball.”
Diabetes and Gastroparesis
Edwards recalls her first diabetic gastroparesis episode in vivid detail. In 2009, she says she would constantly feel the urge to empty her bowels but wasn’t able to. She thought it was just constipation. But once on a date night with her boyfriend, she suffered a sudden bout and also vomited during dinner. She immediately rushed to the hospital and after a few hours, she was discharged and was told that there was nothing wrong with her.
Four days later, she started vomiting again. “First, I vomited the food and after every half hour, I would vomit bile. I went back to the hospital but the medical staff there could not figure out the problem. They prescribed me a medication often used for chemotherapy patients. I would stop (vomiting), they would discharge me, and off I would go back home only to return two to four days later. This went on for a year. I was asked by the hospital not to go back anymore because they didn’t know what was wrong with me,” she says.
She started losing weight, but still had an abdominal belly and would feel bloated and constipated. “My gastroenterologist at the time was clueless and I was dying of malnutrition. My hair was thinning, my teeth were loose, and I was sick all the time”.
A proper diagnosis was made only when her boyfriend recommended the Mayo Clinic in Jacksonville Florida after countless hours of online research. It was only then her condition was diagnosed as gastroparesis.
What is gastroparesis?
In simple terms, gastroparesis can be described as a condition that affects bowel health and delays bowel clearance.
Dr Pradeep Gadge, chairman, Gadge’s Preventive Diabetes Care Centre, Mumbai, explains, “the term gastroparesis is a Greek word, gastro meaning stomach and paresis meaning paralysis. The term means partial paralysis of the stomach.” Gastroparesis usually occurs in people with uncontrolled sugar for long time.
Dr Govind K Makharia, professor, department of gastroenterology, AIIMS Delhi, says, gastroparesis is a condition where the functioning of the stomach is affected. “The food which we eat moves very slowly from the stomach down to the intestine. The food stays for a longer time in the stomach,” he adds.
The digestion process is very well coordinated by the pacemaker cells in the stomach. Dr Makharia says the message transfers through neurons or the automatic neuron system of the GI (Gastrointestinal) tract. “If you are diabetic, viral infections and uncontrolled diabetes affect the nerves and muscles, causing dysmotility (a condition where muscles of the digestive system are damaged),” he says.
Dr Gadge also points out that uncontrolled diabetes leads to neuropathy (nerve damage) and neuropathy does not happen overnight. “It is a slow and gradual process due to long-time uncontrolled diabetes,” he adds.
Gastroparesis risk factors
Dr Gadge says, “the risk is equal for both type 1 and type 2 diabetics. But since type 1 diabetics have lived longer with the disease and its morbidities, gastroparesis is seen more often among them,” he says.
Dr Makharia adds that 20 to 50 per cent of diabetics will develop gastroparesis over some time. A research paper, published in the Journal of Clinical Medicine (2021) quotes a study, stating, among type 1 and type 2 diabetic patients with gastrointestinal (GI) disease symptoms, the incidence of documented gastroparesis was 60 per cent. It further states that a more recent community-based study showed a ten-year cumulative incidence of gastroparesis of 5.2 per cent in type 1 diabetes versus one per cent in type 2 diabetes.
Diabetic gastroparesis symptoms
Dr Makharia says there are multiple stages in gastroparesis. “To start with, there will be no symptoms. As the disease progresses, the person feels early satiety followed by other common symptoms.
The symptoms of diabetic gastroparesis are more predominant during the night. Dr Gadge says, “so when the person is sleeping, suddenly in the night, he will have the urge to go to the loo and will soil his clothes.” People with gastroparesis may develop constipation and diarrhoea, which can last for three to four days and on the fifth day, they may have loose motions, says Dr Gadge.
Some of the symptoms of gastroparesis are:
- Feeling full
- Chest pain
- Abdominal discomfort
The symptoms of diabetic gastroparesis are not always dependent on the kind of food eaten. But according to Dr Makharia, liquid food is better to be consumed as it can pass through the stomach to the small intestine much faster than solid or fatty food, which tends to stay longer in the stomach.
Gastroparesis can affect the overall health of a person. Dr Makharia says, “it can lead to loss of weight, dehydration and malnutrition.”
Gastroparesis and depression
The Journal of Clinical Medicine paper points out that diabetic gastroparesis is associated with depression. Compared to the general population, people with diabetes have a higher prevalence of severe depression and anxiety, which has shown to play a role in the expression of GI sensorimotor dysfunctions, leading to a negative impact on one’s quality of life.
Dr Gadge says, “People with gastroparesis lose confidence. They may not have the will to face society in case of such health conditions.”
Diabetes and gastroparesis diet
People should consult the doctor if they feel full even before completing their meal. Dr Makharia says, “if the diabetes is controlled from an earlier part of life, a lot of complications including gastroparesis can be prevented. Most diabetics have mild to moderate gastroparesis. Only a few are usually affected by the advanced stages of the disease, which affects their quality of life,” he says.
Dr Makharia advises diabetic people to have smaller meals and eat them slowly by chewing well for better digestion.
He explains, “when we eat rice, for instance, we tend to take a large quantity and swallow it without chewing well, making it difficult for it to pass through a well-coordinated pylorus (a part which connects the stomach to the small intestine). Particles which are two or three mm in size do not pass through the pylorus. Hence, the stomach breaks bigger particles into smaller ones. But if you have gastroparesis, the muscle and nerve damage makes it difficult for it to crush the food and so, the food tends to stay longer in the stomach, giving you a feeling of fullness and bloating.”
He suggests that slow eating can help as you chew better. “When you eat with family, you might tend to eat fast. Hence, you can either tell them that you will take longer to finish your meal and seek their support or eat alone,” he adds.
- Drink lots of water since gastroparesis can lead to dehydration
- Avoid fatty food as it is more difficult to digest
- Eat small meals at regular intervals. Instead of three large meals, make it five through the day
- Chew food properly
- Make a habit to have a meal for half an hour
- Have solid food during the day and liquid food in the evening
- Do not lie down for 90 minutes after your meal
- Sleep in a slanting position, with the head in a 45-degree position. One may use two pillows for it
Dr Makharia says if you lie down earlier than 90 minutes after your meal, chances are that the food might pass from the stomach to the respiratory tract, especially among elderly people. “It can lead to cough and eventually, pneumonia and can damage the lung. It is like a water bottle. If it is not closed tight with its cap and you hold it horizontally, the water can leak. But if the cap is tightly closed, it will not leak water. The sphincter between the stomach and food pipe is not tight; it can cause food to move backwards,” he adds.
Dr Gadge says uncontrolled diabetes for a longer duration, say 15 to 20 years, can lead to gastroparesis. “It can get so severe that sometimes, I have also seen people vomiting stool from their mouth,” he says.
Management of diabetic gastroparesis
The predominant factor to prevent gastroparesis is the control of blood sugar. Gastroparesis cannot be cured but managed. Depending on the severity, the person is advised treatment to help manage the disease.
A 72-year-old lady in Pune has been living with type 1 diabetes for 40 years. She has been living with gastroparesis for a few years now, complaining of fullness, loss of appetite, loose motions, and sometimes constipation. A radionuclide-guided endoscopy was performed by Dr Gadge, which is done usually when there is no food left in the stomach. Dr Gadge says, “food takes around six hours to digest. When we did the test, we saw the food was still lying in her stomach. She’s on medication and is leading a slightly better life.”
Dr Makharia says, “Once diabetic, always a diabetic. So, it is important to monitor glucose levels at home regularly and consult a doctor for regular check-ups. Sugar levels should be well controlled and one must follow the advice of their doctor.”
Edwards has also learned to avoid triggers and hospitalisation, but it is still scary. “My remedy is to lay flat on the ground. And yes, I do this no matter where I am or what time it is. I lay down on the floor and lift my hands above my head. This forces the muscles to stretch and calm down. I wish I knew that before I became over $500k in surgery debt,” she says.
Edwards sums up her journey with diabetes and gastroparesis, saying, “diabetes doesn’t control you…you control your diabetes and remember it is not a life sentence and you don’t have to suffer in silence.”