"Will I ever meet someone who can truly relate to what I am going through?”
"IBD can happen to anyone & render our body quite sick,<br> But Family & Friends, be the pillar of strength for me<br> At times when everything seems so wrong, and I cry not because I'm sick,<br> But because just yesterday, I was so strong!"
"I was in my 40's and at the peak of my career, leading a happily married life with three children. Everything was perfect. I exercised 2-3 times a week and ate a balanced diet."
Things started going wrong
Symptoms first started surfacing in 2009. From 2009-2011, they grew so bad that I was compelled to consult 10 different specialists. The ENT, Neurologist, Neurosurgeon, Rheumatologist, Cardiologist, Dermatologist, Ophthalmologist, Psychiatrist, Gynaecologist, Immunologist, Gastroenterologist, nobody was spared.
Symptoms ranged from dizziness, headaches, body ache and muscle cramps in legs, unmanageable fatigue, skin rashes, very dry eyes to heart palpitations. I just couldn't understand what was happening. The two-year journey was like a roller-coaster ride for me and my family.
My husband being very supportive and understanding, patiently accompanied me to almost all my appointments. Then one day, I had a severe episode of diarrhoea (10 trips to the toilet in half a day); I got admitted to a hospital and was diagnosed. I had Crohn’s disease.
Living with the truth
Getting a diagnosis of Crohn’s disease was both good news as well as bad news. ‘Good’ because we finally knew what was wrong with my body. And it was neither infectious nor terminal.
‘Bad’ because there were more questions than answers about Inflammatory Bowel Disease(IBD). Doctors couldn’t tell us what caused IBD, which foods to take or to avoid. All I was told was that I would need to keep a Food Diary to identify what didn't suit me; that there was no cure, but things could be managed with medications for the rest of my life.
Also, this condition is quite rare in Singapore. So, one of my biggest concerns was, “Would I ever meet someone who could truly relate to what I was going through?”
Decision to help others
If I had to go through so many challenges over two years and my case was classified ‘Mild’, what happens to those who have a Moderate or Severe case of IBD?
No charity existed to help IBD patients in 2011; so, with ample support from Rotary I decided to establish one. In May 2012, we were registered under MOH, and in June 2012 we started our Patient Support Group meetings."
This experience was narrated to us by Ms. Nidhi Swarup, President of Crohn’s and Colitis Society of Singapore. Ms. Swarup, who was diagnosed with IBD in 2011, has not stopped doing what she loves, and continues to dedicate her time to empowering others going through the same struggles.
Go to the next page to know more about IBD in Singapore...
What is IBD
Inflammatory Bowel Disease (IBD) is an autoimmune condition of the digestive tract.
The two most common types are Crohn’s disease and Ulcerative colitis. While Ulcerative colitis is limited to the large intestine, any part of our entire digestive tract from the mouth to the other end can be affected in Crohn’s disease. Both of these illnesses lead to inflammation and ulcers in our digestive tract.
Warning signs of IBD
Usually, adults would experience diarrhoea, fatigue, abdominal pain, at times fever, vomiting or blood in their stools.
On the other hand, young children might have low-grade fever over an extended period of time and that too just at night! Moreover, feeling tired is also mistaken by many as unwillingness to attend school or the general flu.
Loss of appetite, weight-loss or lack of age appropriate weight-gain, increase in height and abdominal issues for an extended period of time are some of the signs to look out for.
There are an estimated 2,000 patients in Singapore, of which approximately 200 are children. In the last 5-7 years, more children are being diagnosed with IBD.
How IBD impacts you
IBD affects a patient at three different levels of daily life:
- Physically : Besides the inflammation (swelling with redness) and ulcers, IBD can lead to abscess, fistula, narrowing of intestines, blockage, fissures or in some cases even perforation of the intestinal wall. If IBD is not managed well, a patient will need repeated surgery to remove damaged parts of the intestine.
- Emotionally : Fatigue is an integral part of IBD and it can lead to patients having to randomly skip school, work commitments and social activities leading to a lot of emotional challenges. At times bouts of feeling ‘low’ can lead to further strain in relationships.
Clinical depression is also a reality not only for the patient, but also for his immediate family members, who find it challenging and exhausting to deal with a patient with an illness with ‘no cure’ and ‘no known cause’.
While an adult IBD patient comes to terms with his diagnosis sooner or later, it is the parents of IBD children that face bigger challenges. They face complex emotional issues ranging from guilt, anger, anxiety and fear, to depression.
- Financially : The biggest issue IBD patients face in Singapore, is that most of the healthcare costs are on an outpatient basis.
Consultation with Specialist Gastroenterologists, numerous blood tests, CT scans, endoscopy, X-rays and even intravenous medications are administered on an outpatient basis. With no insurance, most families face high costs associated with these tests.
How to get help with IBD in Singapore? Go to the next page to find out!
Crohn’s & Colitis Society of Singapore (CCSS)
The Crohn’s & Colitis Society of Singapore (CCSS), tries to engage family members of IBD patients to understand the need to look into their Insurance Coverage, since some of them would be at risk of being diagnosed with IBD.
Isn’t it better to be insured while you are still in good health? Ms. Swarup tells us, "Parents are shocked to learn of the high cost of a ‘nutritional drink’ that their child needs to take for 6-8 weeks when IBD is suspected.
CCSS subsidises this cost for all our members and in partnership with the Crocodile Foundation, CCSS provides 100% subsidy for families that meet the criteria.
The IBD Monitoring Fund provides a cash subsidy to Middle-income families per calendar year to encourage IBD Patients’ compliance to the prescribed treatment plan of the doctors."
CCSS has also negotiated a 50% subsidy for the Biologics needed to manage ModerateToSevere IBD cases. It is again to help IBD Patients from Middle-income bracket."
Managing IBD in Singapore
Ms. Swarup shares, "Initially, I had to cut down on many of my activities in order to manage the fatigue levels. Firstly, I quit my full-time job after I understood the type of Crohn’s disease I have to deal with for the rest of my life. Moreover, I maintained an excel table of what is known as a Food Feelings Symptoms (FFS) Diary. For six months, on a daily basis I recorded every ingredient I had for my breakfast, lunch, snack and dinner. By analysing this table I was able to identify some of the food items that are not suitable for me.
May I highlight that each one of us has a different response to the same ingredient or food item. Hence if vinegar doesn’t suit me doesn’t necessarily mean that everyone else should avoid vinegar. Nuts might work for some but not for the others, similarly with fruits, meat and vegetables."
Coping up with IBD in Singapore
When it comes to your bowels, many people are ashamed to talk about it. Ms. Swarup affirms, "Yes, some IBD patients have to make numerous trips to the toilet in a day and naturally it causes anxiety in us. None of us would be comfortable should an accident occur.
Whenever possible, we excuse ourselves in good time to safely make it to the toilet. Some of us have even quit our existing workplace or changed professions since IBD poses numerous challenges to a working adult.
In an ideal world, employers would truly understand the illness and try to work with an employee so that he can continue to be a productive member of society, and support his family. Similarly, schools, colleges and institutions of higher learning can make an effort to integrate a child coping with IBD.
After an initial phase of diagnosis and treatment, which might create a lot of disturbance in routine, we need to provide some space for appropriate medicines to take effect. The more we are able to accommodate a student or employee, the better it is for both parties in the long-term. Kindly allow me to repeat that stress can make things worse, so, let's help in whatever way possible."
What are some myths when it comes to IBD in Singapore? Go to the next page to find out!
Some myth busters for IBD
You will be surprised by the number of myths surrounding IBD. Let's bust some of them:
MYTH 1 : Stress causes IBD.
FACT : Stress can make symptoms of IBD worse but does not cause IBD. Researchers have not yet found a specific cause for IBD although our genes, environmental conditions and our lifestyle are the possible culprits.
MYTH 2 : IBD is caused by eating some wrong food or certain dietary habits.
FACT : Thus far there is no evidence that any specific diet can cure IBD. Certain foods can help manage the symptoms or avoiding foods that don’t suit a person helps avoid a flare-up of symptoms.
MYTH 3 : IBS & IBD are similar, no big difference. If I have IBS does it mean that I will get IBD?
FACT : Irritable Bowel Syndrome (IBS) is just an inconvenience and doesn’t manifest as any physical evidence by doctors. On the other hand, IBD has clear evidence in blood tests where ESR & CRP levels will be higher than normal and a colonoscopy would show ulcers and inflammation in the digestive tract. Moreover, having IBS doesn’t necessarily mean that the patient would have IBD.
MYTH 4 : Chinese don’t get IBD.
FACT : In Singapore, IBD Patients come from all ethnic backgrounds represented here. While Indians tend to have a 2% higher susceptibility to IBD when compared to other races, Chinese, Malay and others are represented proportionately to Singapore’s Ethnic make-up.
MYTH 5. You should never take steroids, they have bad side-effects.
FACT : These days there are specific steroids that target the problem areas of a patient’s body leading to fewer side-effects as seen ages ago. For IBD Patients certain steroids have shown to have worked very effectively to manage out Gut symptoms without major side effects. Compliance to prescribed medication is essential for its effectiveness.
MYTH 6. Long-term remission means the patient has been cured.
FACT: If a patient has been in long-term remission it would not be concluded that he/she has been cured of IBD. If a patient or his family believes so and stops medication, IBD can be back and in some cases with more severity.
Takeda, Marvel and IBD
Takeda Pharmaceuticals Company Limited is the first pharmaceutical company to partner with Marvel Custom Solutions on a disease awareness campaign. They have recently launched a new superhero squad: IBDUnmasked – where these Superheroes highlight the daily battles and the remarkable strength of those living with IBD.
Says Ms. Swarup, "IBD patients will definitely get excited when they learn about the new campaign –IBD Unmasked. Through Superheroes, some of us will draw motivation, other will gain hope while some will continue their lives in high spirits with confidence that IBD Can’t Stop us. I have seen quite a few in our group who truly believe that they are bigger, stronger and resilient, despite IBD. These patients will totally relate to the Superheroes being created!"
People with IBD and/or those who have a friend, loved one or co-worker with the condition can download more information at IBDunmasked.com. Here, they can also access the first chapter of The Unbeatables – a new Marvel comic about the adventures of five Super Heroes, all of whom are affected by the condition in their own ways. To join the conversation, please use the twitter handles @IBDunmasked and #IBDunmasked.
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