New society in UAE to offer support to patients with inflammatory bowel diseases

Abu Dhabi: It is often a hidden disease, yet more and more people in the UAE must endure the debilitating pain and discomfort that comes with inflammatory bowel diseases (IBD).

To support them, a group of doctors and patients have launched the UAE IBD Society, under the supervision of the Ministry of Community Development. World IBD Day is observed on May 19.

Rising prevalence

IBD is a broad term used to describe conditions that cause inflammation of the digestive system, with Chron’s disease and ulcerative colitis being the two most common forms. Around the world, about ten million people are known to suffer from IBD. In the UAE, it is expected to afflict between two to four per cent of the population, numbering about 20,000 patients, but doctors believe its prevalence is on the rise.

“There is no known cure and the diseases can be caused by a range of factors, including genetic, autoimmune and environmental causes. Unfortunately, most patients are also misdiagnosed, meaning that they must live with challenging symptoms until they can get a proper diagnosis and treatment,” said Dr Zaher Koutoubi, consultant gastroenterologist at the Cleveland Clinic Abu Dhabi.

Creating community

“We decided to contribute towards making a difference for the people in the UAE who are affected by IBD. My aim was to create a community that is a welcoming, informative and safe environment within which patients can talk comfortably about their condition. We want to encourage people to come forward, to actively seek advice, to share knowledge and to ultimately support one another to achieve a better quality of life,” added Dr Maryam Al Khatry, gastroenterologist and head of the department at Ibrahim Bin Hamad Obaidullah Hospital in Ras Al Khaimah.

Inclusive programme

Dr Al Khatry, who has worked with IBD patients for years, took the initiative to launch the society, having seen first-hand the challenges that patients face.

The IBD society will offer an inclusive programme aimed at improving the quality of life for patients. Efforts will be aimed at empowering patients to share their experiences so that members do not feel isolated, and towards enrolling prominent voices to advocate for the community’s needs. The society also plans to organise activities to increase public awareness, and to enable the development of a UAE patient registry.

“For IBD patients, it is a long journey from first experiencing symptoms to diagnosis to even finding the right therapies. The whole process also negatively impacts mental health and wellbeing, which is why the society can be especially beneficial for patients,” Dr Koutoubi said.

The CCAD alone treats 760 IBD patients, of whom 70 per cent are Emiratis. “In addition to diagnosis, patients must also continue to undergo follow-up treatment involving bloodwork, stool studies, imaging and endoscopies to ensure that healing is sustained,” the doctor said.

What is IBD?

Inflammatory bowel diseases are conditions marked by the inflammation of the intestines. Two common forms are ulcerative colitis and Crohn’s disease.

Ulcerative colitis is limited to the colon or large intestine.

Crohn’s disease can involve any part of the gastrointestinal tract from the mouth to the anus. Most commonly, it affects the last part of the small intestine, or the colon, or both.

Onset: The onset of the diseases is typically at adolescence, and in young adultdood.

Causes: The exact cause is often not known, and the inflammation can be multi-factorial, related to malfunctions in the immune system, genetic causes and environmental factors. The inflammation damages the intestinal wall, causing symptoms.

Symptoms: The most common symptoms include abdominal pain, diarrhoea, rectal bleeding, fever, coupled with weight loss, anorexia and anaemia. The symptoms tend to flare and wane depending on the severity of the inflammation at different times. Over time, patients can also develop mental conditions such as depression and anxiety as a result of the challenges presented by IBD.

Complications: If untreated, IBD can lead to profuse bleeding, bowel perforations, bowel obstructions or strictures, fistulae or abnormal passages in the bowels, and malnutrition — and even cancer.

Treatment: Treatment typically involves the use of steroids in the acute phase, biologic therapies and surgery.

Join the UAE IBD society by logging on to www.ibduae.ae

Case study

Sarah Sajwani has an unmistakable zest for life and has always been a go-getter. But abdominal issues have plagued the 28-year-old Emirati entrepreneur since she was 12 years old.

Four years ago, Sajwani suddenly lost eight kilograms in a month while on a trip to London and had profuse rectal bleeding. Fatigued and in pain, she returned to the UAE, where she was hospitalised for three months. It was then that she was diagnosed with Crohn’s disease.

“The diagnosis was a relief, yet it was a major shock for me. I didn’t want to deal with a chronic disease for the rest of my life,” Sajwani told Gulf News.

Her family was equally concerned, knowing Sajwani’s ambitious nature. “They could not bear to see me confined to a hospital. I was on a liquid diet and so weak that even going to the bathroom was an ordeal,” she recounted.

But Sajwani found the strength to move on. Three months into her diagnosis, a social worker connected her with a group of IBD patients on a WhatsApp group.

“I was happy to be able to speak to people who understood me. Even though my doctors knew what I was going through, they hadn’t experienced it themselves. So it felt good to speak a common language,” Sajwani said.

The Emirati eventually began turning her disease into an opportunity. Hospitalised multiple times, including once for a colon resection, she began working on her passion and launched an app called Shades that offers luxury beauty services in Dubai and Sharjah. The app will soon cater to customers in Los Angeles and Sajwani said she hoped to give similar strength to other IBD patients.

In the meantime, Sajwani is part of the UAE IBD Society’s patient advisory board and hopes to support other IBD patients.

“We cannot only support one another morally, but also marshal resources for patients facing difficulties with medication access,” she said.