Living with inflammatory bowel disease (IBD)

There’s nothing like being able to indulge in your favorite dishes after a long day at school or work, or hanging out with friends over a cup of coffee. The digestive system usually does a good job dealing with all of the food we consume in a day, and we often don’t pay attention to it unless something goes wrong. Many of us can easily take an over-the-counter remedy for stomach pain or diarrhea, but some experience trouble with their colon on a long-term basis.

For people with inflammatory bowel disease (IBD), experiencing gut pains is almost a part of everyday life. Sometimes, the pain gets so bad that people can’t function well while doing daily activities. Last year, Japan prime minister Shinzo Abe had to retire from duty because of issues relating to ulcerative colitis, a type of IBD.

Inflammatory bowel disease generally has two types: Crohn’s disease and ulcerative colitis. The goal in treating these diseases is remission, or a state where people do not experience symptoms.

What goes on when you have IBD

Diseases under the IBD umbrella involve the intestines, and vary in terms of severity and location. Crohn’s disease usually affects both the small and large intestines, but may also cause abnormalities in other parts of the digestive tract. Meanwhile, ulcerative colitis is confined to the colon and rectum. Both of these diseases cause chronic bowel inflammation in patients.

“The most common symptoms that IBD patients present with are abdominal pain (with or without blood), fatigue and weight loss,” Dr. Ruter Maralit, a gastroenterologist at the Philippine General Hospital, told Rappler.

Because forms of IBD share symptoms with more common illnesses, it can take a long time before a diagnosis is made.

“These symptoms are not specific for IBD. Depending on the aggressiveness of its presentation, sometimes it may take months and even years to confirm a diagnosis,” he added.

Mild abdominal pain is usually overlooked by people who experience them, while diarrhea and constipation are often blamed on eating spoiled food. It is only when people experience more alarming symptoms like bleeding or severe pain that they visit a doctor for a checkup. 

In 2019, Ron Dangcalan, a college professor with Crohn’s Disease, visited several hospitals after experiencing severe symptoms. It took several hospital visits and tests before he was diagnosed.

“For 10 years before my diagnosis, I had recurring blood in my stool. It was initially diagnosed as hemorrhoids,” he said. “Then I started having more intense symptoms: sudden weight loss, abdominal pain, lack of appetite… until such time that I couldn’t walk. The final verdict was made when a portion of my intestine was removed and tested. It was Crohn’s disease.” 

Diagnosis of Crohn’s or colitis is made after endoscopy or colonoscopy, depending on a gastroenterologist’s course of action. Tissue samples are taken during the scope and sent to a laboratory for testing. Results will then help rule out other conditions and help pinpoint if a person is experiencing IBD.

Living with IBD

While inflammatory bowel disease is in itself not fatal, it can dramatically affect one’s way of life if left untreated. Tasks such as going to work, hanging out with friends, and eating out all become more difficult when the disease causes symptoms or a “flare up.”

Ron was at a career-high when he got diagnosed. He had academic opportunities abroad and was leading a local organization. 

“It seemed like my world ended. I was at a very productive stage in my career… I had local and international research projects,” Ron added, talking about his diagnosis.

“Why in the world did this illness come when my dreams were just beginning to unfold? I shed so many tears until I had no more.”

IBD can take a toll on one’s mental health because of how it affects professional and social life. There is uncertainty about when the disease could flare. Some patients also feel embarrassed about opening up to others regarding their condition.

Ron became more hopeful after talking to other people with IBD, consequently joining a support group for people living with these illnesses.

“I was mad at the world, at our health system, even at our scientists for not finding a cure to this dreadful disease,” he said.

“It was the testimonies of fellow patients that made me calmer. I learned to let go of things beyond my control.”

Dr. Maralit also has conversations with patients about their thoughts on living with the disease. 

“All of my patients with IBD have affected qualities of life one way or the other. Many of them are concerned about the risks of eating out, the stressful demands of their work, and how limited their overall activities would be,” he said. 

Despite these worries, Dr. Maralit said that the disease is manageable. “As long as IBD is controlled with medications and they are in relative remission, then people can live actively with minimal limitations.”

Treatment and lifestyle changes

The cause of these diseases is unknown. There are several theories about their origins, involving genetics, immune response, and exposure to certain pathogens.

Due to the mystery surrounding the disease, there is currently no cure for IBD. Medication is aimed at treating the inflammation and is often long-term – drugs used for IBD range from localized aminosalicylates to corticosteroids, depending on the severity. However, treatment is also not a “one size fits all” scenario because IBD manifests differently per person.

“Treatment for Crohn’s is not a simple answer. It requires specialist care,” Dr. Marallit said. “There are several regimens available, but we need to consider what organs are involved, and the severity and aggressiveness of the disease.”

Even though medication can induce and maintain remission, certain lifestyle adjustments can help improve the quality of life. These involve eating healthy, sleeping early, and being more active. 

“We highly encourage patients to increase their physical activity and exercise. In terms of diet, food with high fiber (fruits and vegetables) and low fat are recommended,” Dr. Maralit said. “Adequate sleeping time, avoiding stress and vitamin D supplementation may also help patients with Crohn’s.”

Ron also experienced comfort after switching up his lifestyle. He cut off sugar and fat from his diet and tries to avoid stressful situations.

“I am trying to sleep early but obviously I am not very good at it,” he said. “Most importantly, I am trying not to stress myself with the little things. Having a positive outlook is not a choice, but a must for us even if it is difficult.”

Moving forward

Despite the risks that come with the disease, Dr. Maralit is confident that anyone with IBD can overcome it with proper care and maintenance.

“My advice to patients is that they need not fear the disease,” he said. “IBD diagnosis is not a death sentence. The earlier it is recognized and diagnosed, the earlier we can avoid the complications.” 

He also stressed the importance of regular checkups and medication. “Healthy lifestyle and compliance with medications is key. Regular follow-ups with a gastroenterologist are also necessary to maintain remission.”

Ron is hopeful that more people will become aware of the disease and the difficulties that come with it.

“Just because I look healthy doesn’t mean I am not suffering. Most of the symptoms of IBD are not seen,” he said. “I also strive to show people that having IBD doesn’t mean the end of our career and service to others. After my operation, I used every opportunity to speak about IBD.”

When he is not teaching at the University of the Philippines Los Baños, Ron helps maintain Crohn’s and Colitis Philippines, a support group for Filipino IBD patients.

“I used to just talk or write about service, compassion and humanity. Having IBD made me experience and truly understand what they mean,” he said. “IBD patients don’t just drain people’s money, we can be productive members of society.” – Rappler.com

Jericho Igdanes was a Rappler intern.