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For Crohn’s disease sufferers, this is a regular and often embarrassing scenerio. Many people aren’t aware of what the disease is and are insensitive to the needs of people who have it.
We spoke to Dr David Epstein, a gastroenterologist in private practice at Vincent Pallotti Hospital in Cape Town, about how sufferers and those around them can cope with this autoimmune disease.
What is an autoimmune disease and how does it differ from other illnesses?
An autoimmune disease is when the body’s immune system mistakes healthy cells for harmful foreign ones and attacks them. Autoimmune diseases can affect almost any type of tissue, structure, function or system of the body, including the skin, joints, brain, glands and cardiovascular system, endocrine system, and digestive tract. Over 100 autoimmune conditions have been identified.
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What is Crohn’s disease?
Crohn’s disease (named after American gastroenterologist Dr Burrill Crohn) is a type of autoimmune disease where the intestine and/or colon is affected. This results in inflammation of the lining of the gut causing diarrhoea which may contain blood, stomach cramps, loss of weight and fatigue. The inflammatory process in Crohn’s disease can burrow through the lining of the gut causing complications such as fistulas or abscesses or result in scarring causing a stricture or narrowing. Crohn’s can develop at any age but often starts in adolescence or early adulthood.
The exact cause is unknown but it is thought to be due to a combination of genetic factors, environmental triggers (e.g. smoking), a unique immune system dysfunction and the bacteria normally found in our colons and intestines.
How is it treated?
There is currently no known cure for Crohn’s (or its inflammatory bowel disease counterpart, ulcerative colitis). Drugs to suppress the immune system and to induce and maintain remission are the mainstay of medical management; however 30% of Inflammatory Bowel Disease (IBD) patients fail to respond to first-line drugs and will then be considered for a biological therapy or surgery to remove the affected part of the gut.
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What advice would you give to employers dealing with employees who have Crohn’s?
Employer education is key in resolving many of the work related problems a patient will encounter. Most employers and HR personnel have little or no knowledge about the disease. IBD may be confused with IBS, irritable bowel syndrome, a more benign disease or may be considered an infectious disease. A Crohn’s patient may appear outwardly healthy and therefore the severity of the illness may not be fully appreciated.
An employer who understands the disease can make a huge difference in the life of a Crohn’s patient. Flexibility with working hours, acknowledging that Crohn’s patients may experience unpredictable incapacity, moving a patient to a desk near a toilet or giving them a private toilet to use at work are some things an employer can facilitate to make life easier for a Crohn’s patient. Changing job description, for example the need to travel, can have a huge impact on the working life of a Crohn’s patient.
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What advice would you give people with Crohn’s who are embarrassed about their illness?
Crohn’s disease is a lifelong illness and for many patients their journey with Crohn’s disease is a lonely one. Feelings of shame, embarrassment and fear of rejection are common and many patients do not disclose their illness to friends and colleagues. I even have a patient who is so secretive about his illness close family members are unaware of his Crohn’s diagnosis. It is important to realise “you are not alone”.
Thousands of people in SA suffer with Crohn’s disease and meeting other Crohn’s patients is helpful in overcoming embarrassment about the disease. Disclosure to friends and colleagues about the disease often results in support and understanding and is encouraged.
