It is a silent shame suffered by some, about an aspect of our lives that most may prefer to keep private: bowel movements.
But for a person with Inflammatory Bowel Disease (IBD), secrecy is difficult to maintain.
Frequent bathroom visits may become a subject of ridicule to others, particularly at the workplace or at school. Excuses of illness soon ring hollow after the first few instances. Recurrent absences give the impression of delinquency.
“By highlighting these issues, we hope to increase awareness and understanding for those who suffer from IBD — not just for the patients we already know of, but for other medical professionals to recognise the symptoms and consider the disease as a possibility,” explains Dr. Rene Ramnarace.
Dr. Ramnarace is a consultant gastroenterologist and the co-founder of The National Association of Crohn’s and Colitis of Trinidad and Tobago (NACCTT). Together with his co-founder Kelly Ann Bahadur, who suffers from IBD, Dr. Ramnarace lends his expertise to engage and educate patients and the wider public about Crohn’s Disease, Ulcerative Colitis and other forms of bowel disease.
“IBD does not have the same widespread knowledge and awareness as lifestyle diseases such as diabetes and hypertension,” says Dr. Ramnarace. “One’s experience ranges from mild discomfort to chronic pain, but it is not as life-threatening as many other diseases, and patients have to find ways to lead a successful life despite their symptoms.”
The Field of Gastroenterology
The sub-specialty of gastroenterology is fairly unique in Trinidad and Tobago, with only a handful of practicing doctors in the field.
For Dr. Ramnarace, the specialty chose him.
“Gastroenterology covers a wide range of organs, and I really enjoy the variance in the field — on one day I can have a patient with liver failure from alcoholism, another patient vomiting blood due to a stomach issue, and an outpatient with Crohn’s or Colitis,” he says.
“There is also a hands-on aspect where I get the opportunity to interact with technology. The boundaries of endoscopy are being pushed as technology keeps advancing.”
He recently attended the Conference of the Association of West Indian Gastroenterologists (AWIG), which consists of gastrointestinal specialists from all over the Caribbean, as well as doctors resident in the USA, Canada and Europe. It was a priceless experience for Dr. Ramnarace, who relished the opportunity to keep up to date with advances in the field, and also to connect with international experts.
Dr. Ramnarace’s greatest appreciation for the field is the opportunity to make a positive impact on others, particularly on his young patients, as early intervention can make the world of difference to the lives they go on to lead.
This is particularly relevant to Crohn’s Disease and Ulcerative Colitis.
IBD: Crohn’s & Colitis
Crohn’s disease and Ulcerative Colitis are types of Inflammatory Bowel Disease (IBD).
Not to be confused with Irritable Bowel Syndrome (IBS), which is a much less serious condition, IBD is considered an autoimmune disease which occurs when the lining of the GI (gastrointestinal) or digestive tract becomes inflamed. This disrupts the body’s ability to digest food, absorb nutrition and eliminate waste in an effective manner.
“There is often a genetic predisposition to IBD, which is then triggered by an environmental factor such as infection or stress that ‘turns it on’,” explains Dr. Ramnarace. “Once the damage is done, the body cannot ‘turn it off’.”
The main difference between the two most common forms of IBD is the location and nature of the inflammatory changes.
“Ulcerative colitis is continuous, and is usually limited to the innermost layer of the bowel — the colon and rectum,” explains Dr. Ramnarace. “Crohn’s disease, on the other hand, is transmural and goes through the entire thickness of the bowel wall. It can affect any area in the GI tract, and can be patchy.”
The treatments for both types of IBD often overlap, and their symptoms are also similar in nature. These include:
- Abdominal cramps and pain
- Bloody diarrhoea
- Severe urgency to have a bowel movement
- Loss of appetite
- Weight loss
- Anaemia or low blood count
In some instances of Crohn’s Disease, there may also be extra-intestinal manifestations such as liver problems, arthritis, skin manifestations and eye problems. Ulcerative Colitis may be associated with ulcers or open sores, and its main symptom is frequent bloody diarrhoea.
NACCTT: patient-driven, patient-focused
Founded in 2013, The National Association of Crohn’s & Colitis of Trinidad and Tobago is a non-profit, non-governmental organisation aimed at giving support to patients, family and friends of persons affected by IBD. Its inception began as an idea of Dr. Ramnarace’s to improve patient compliance.
“In the United Kingdom, where I did my training, the outlook of patients is heavily dependent on various community-driven groups of those with the disease,” he notes.
Among young populations in particular, patients may be in denial that they have a medical issue, and might not adhere to the doctor’s recommendations for a medical course of treatment.
“Rather than taking a paternalistic approach — ‘take this medication because your doctor said so’, it works much better to have the patients lead and encourage themselves,” says Dr. Ramnarace. “When I returned to Trinidad, I pitched the idea to some of my patients, and Kelly-Ann was the most motivated — she took it from there, and this has been her brainchild since.”
The NACCTT group meets every 2-3 months, and they discuss topics including matters of interest to patients. These may relate to recent incidents such as surgery or illness of a fellow patient, drug reactions, dietary considerations, employment rights for those who suffer from IBD, and advancements in research and treatment for IBD around the world.
“The sessions are particularly useful for recently-diagnosed patients who have a lot of questions,” adds Dr. Ramnarace. “Here, they can meet others who have been through it — and these range a wide spectrum, from those whose symptoms are difficult to control, to those who have only mild symptoms or are in remission.”
With the ongoing support and camaraderie of its members, the NACCTT helps patients to become their own advocates and ambassadors.
Based on research conducted in the Caribbean region, it is estimated that IBD may affect 2.4 per 100,000 with Ulcerative Colitis and 1.8 per 100,000 with Crohn’s disease. In Trinidad and Tobago, this may amount to only thirty or forty new diagnoses per year.
As it is relatively uncommon, it is often missed when a patient visited his or her primary care physician. Part of the NACCTT’s mandate is to spread awareness among doctors so that they would be mindful of the disease’s signs and symptoms.
Living with IBD
Crohn’s Disease and Ulcerative Colitis are chronic (lifelong) illnesses, with periods of acute flare-ups and other times of remission. Ulcerative Colitis is an intermittent disease, with episodes of exacerbated symptoms, and others which are relatively symptom-free.
Treatment for both types of IBD include drugs to reduce inflammation such as steroids, immunomodulators, and antibiotics; and drugs to manage symptoms such as antacids, analgesics, anti-diarrhoeals, antispasmodics, and vitamins and minerals that may be required as supplements. Surgery may be recommended if drug therapy fails.
Persons with IBD are also at a greater risk of problems such as dehydration and malnutrition. A balanced diet is recommended. While one’s diet does not cause symptoms, it can worsen them. It may be helpful for patients to keep a food journal of ‘safe foods’ and ‘trigger foods’.
A low stress lifestyle will also help to manage symptoms. Light exercise such as walking, swimming and yoga can also help alleviate symptoms.
“Most people go on to have successful families and careers. Members in the NACCTT are managers, telecommunications specialists, labourers, mechanics — they cannot feel sorry for themselves or let the disease keep them back from living their lives,” says Dr. Ramnarace. “Once we are able to intervene at an early stage, the disease should not limit one’s lifelong ambitions.”
He recalls an incident with a nine-year-old patient who was teased at school for frequent diarrhoea and accidents.
“When his father brought him in, he was so embarrassed he would not make eye contact; he had lost all confidence and was very withdrawn,” he says.
“It turned out that he had colitis, and we began treatment. About a month later when I saw him again, he was making eye contact and talking to the point of being cheeky — he was just a totally different child. I imagine what might have happened if he had gone undiagnosed. That is the true beauty of the specialty — by catching the disease at an early stage, he now has a brand new outlook on life.”