Crohn's disease patient describes her struggle and the determination to help other sufferers

Abeer Fadil, who plans support group for those affected by illness, opens up about debilitating condition

At Cleveland Clinic, Abeer Fadil, is regarded highly for her efforts to tackle the stigma surrounding Crohn's disease. Christopher Pike / The National

After being comatose for six months, Abeer Fadil opened her eyes to find she had been terminated from her banking job. Looking back, she sees the dismissal as a blessing in disguise.

“God sent me the coma to wake me up,” the 42-year-old Iraqi said.

“’Abeer, wake up, yalla, you have to take care of yourself.’ Nothing happens in the world without reason.”

Before slipping out of consciousness at the age of 30, Ms Fadil had experienced chronic abdominal pain, vomiting, diarrhoea and incessant fatigue since her late teens.

Whenever she would visit a doctor to report her symptoms, she would be prescribed a tablet and told to go home and rest. It took more than a decade of suffering in silence before Ms Fadil, a lifelong resident of the UAE, finally received a proper diagnosis and treatment for Crohn’s, an inflammatory bowel disease (IBD) that affects the gastrointestinal tract.

“At that time, the Crohn’s was eating my stomach from the inside,” said Ms Fadil.

She has since been referred to the Cleveland Clinic Abu Dhabi to be treated by a team of specialists in the country’s first Digestive Disease Institute. Although still in recovery from undergoing surgery three months ago, Ms Fadil is determined to form a support group for other people living with Crohn’s or ulcerative colitis, another inflammatory bowel disease that affects the colon.

“We are trying to create a help group to help patients know exactly what is Crohn’s and how to deal with it because most of the patients they don’t have any idea about that,” said Ms Fadil. “It will help them know how to deal with this disease and how to take care of it.”

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Although there are no official statistics on the number of IBD patients in the UAE, the prevalence among UAE nationals is believed to be between 2 and 4 per cent of the population and growing, said Dr Zaher Koutoubi, staff physician, gastroenterology and hepatology in the Digestive Disease Institute at Cleveland Clinic Abu Dhabi.

In the United States, it is estimated that some 1.6 million Americans suffer from IBD, with approximately 70,000 new cases diagnosed each year.

“We see in the UAE a lot of younger patients in their 20s and in their teens with the disease,” said Dr Koutoubi. Young adults between the ages of 15 and 35 are most susceptible, but anyone can get IBD.

“Most of the patients get abdominal pain, they get think they have irritable bowel disease and they tend to actually have inflammation rather than irritable bowel,” said Dr Koutoubi. “We have patients diagnosed with hemorrhoids, but they are misdiagnosed, actually they do have Crohn’s disease.”

About 20 per cent of the cases are due to genetics, but the exact cause of inflammatory bowel disease remains unknown. One possible trigger is an immune system malfunction, said Dr Koutoubi.

“An abnormal immune response causes the immune system to attack the cells in the digestive tract,” said Dr Koutoubi. “This may impair the normal functioning of the immune system and the body’s defense mechanism attacks body’s own tissue causing inflammation of the mucosal lining.”

The inflammation causes “a significant impact” on patients’ quality of life “through ongoing symptoms, reduced ability to work, social stigma, bathroom access, difficulty with physical intimacy, and a restriction in career choices,” according to the Crohn’s & Colitis Foundation.

Ms Fadil’s goal with the patient support group is in part to tackle the stigma of Crohn’s disease and help sufferers and their families open up about IBD. In her hospital ward, she frequently approaches other patients to encourage them to talk about their condition.

“Sorry for these details – but it’s because it involves stools and these things, they are shy to talk about it,” said Ms Fadil. “Some people they are shy to even say, ‘I have diarrhea.’ OK, why are you shy? Say it, talk! In the beginning, they were very afraid to talk with me and I would say, ‘Why, yanni, we are sharing the same pain, so let’s exchange the information. Whatever new information I have I will give to you, whatever information you have, you give it to me, so it will be easier for everyone.”

Ms Fadil is in the final stages of forming the group, which will eventually be open to any IBD patient in the country. She said the goal will be offer them and their family free access to professional and peer support once a month.

Dr Sara El Ouali, a staff physician in the Digestive Disease Institute at Cleveland Clinic Abu Dhabi, commended Ms Fadil’s courage and initiative in leading the efforts to form the patient support group.

“She is very inspirational,” said Dr El Ouali. “At Cleveland Clinic Abu Dhabi we try our best to give them informational pamphlets, spend time with them, explain to them their disease, but unfortunately a lot of them feel very alone in their disease and they feel like they could be the only ones having this disease and suffering and I think that’s why it’s important to support them.

"Medicine is not just about giving medications and treating the disease, it’s about healing the patient and we need to care for the patient as a whole and make sure that they’re not only well treated, but they also have the support that they need to have a better life.”

For more information about the Crohn’s disease and ulcerative colitis support group, email [e-mail] or call 050-835-8855.

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What is Crohn's disease?

Crohn’s disease and ulcerative colitis belong to a group of conditions known as inflammatory bowel diseases, or IBD. These disorders affect the gastrointestinal (GI) tract, the area of the body where digestion takes phase. The diseases cause inflammation of the intestine and lead to ongoing symptoms and complications. There is no known cause or cure for IBD, but fortunately there are many effective treatments to help control it. If medications fail to control the symptoms of IBD, or if certain complications occur, surgery may be required

Symptoms and complications

Ulcerative colitis involves the inner lining of the colon, while Crohn's disease involves all layers of the intestine and can occur in both the small intestine and colon. Symptoms range from mild to severe and even life-threatening, and include any or all of the following: persistent diarrhea; abdominal pain or cramps; rectal bleeding; fever and weight loss;  fatigue; joint, skin, or eye irritations; delayed growth in children.

Treatment

Medications currently available alleviate inflammation and reduce symptoms, but do not provide a cure or prevent long-term complications. Surgery is sometimes recommended when medications can no longer control symptoms, when there are intestinal obstructions, or when other complications arise. An estimated two-thirds to three-quarters of persons with Crohn's disease will have one or more operations in the course of their lifetime.

Source: The Crohn’s & Colitis Foundation