IBS: Suffering in Silence

By Krista Fuller

February 2003

Diagnosing IBS is often a challenging process that can last several years. Many people who are affected by IBS self-medicate and do not seek medical attention.

Abdominal pain, diarrhea, and constipation. Imagine dealing with these aggravating symptoms at the age of 15. Jeffrey Roberts, BSc, president and founder of an online irritable bowel syndrome (IBS) Self Help Group, founder of the IBS Association, and cofounder of the Lotronex Action Group, is an example of how a lifelong battle with IBS can change a person’s perception of a normal, healthy life.

Still a misunderstood disease and often treated as a psychological condition, IBS is a real condition that can be debilitating to a person’s life. IBS statistics are sobering: An estimated 35 million Americans have the disease. It ranks second only to the common cold as a cause of lost work time and accounts for approximately 3 million physician visits in the United States every year.1 The path to an accurate diagnosis of IBS is often a confusing, complex, and emotional process. However, family members, physicians, dietitians, and support groups can provide IBS sufferers instant information and relief.

Diagnosis Dilemma

Roberts says that he was diagnosed with IBS at age 15. “My symptoms were abdominal pain, diarrhea, and constipation. I didn’t really understand the symptoms,” he says. Dealing with uncomfortable symptoms at school was difficult for Roberts. “I had to leave class to go to the bathroom all the time,” he says. I was also not able to partake in social activities.” Now, at age 41, IBS still impacts many aspects of Robert’s personal life. “IBS affects my entire family because I am often unable to participate in family functions either as a result of severe pain or fear of leaving the house. I am never certain of how I am going to feel.”

At age 15, Roberts was shuffled through a series of doctors to pinpoint the cause of his pain. A question Roberts continued to ask was, “How can someone, who feels so awful and has so much pain, have something called IBS? I thought it had to be something far greater than that.”

Roberts began the first wave of tests, including a gastrointestinal series, barium enema, lactose intolerance test, and a consultation with his family physician and a gastroenterologist. “I went through the lactose test twice, due to inconclusive results,” he says. “At the time, checking for lactose intolerance consisted of drinking a lactose solution and having blood drawn every 30 minutes. Today, it is much easier; they just do a breath test.”

In addition to the influx of medical tests, Roberts experienced mixed messages on why a 15-year-old boy would be in so much pain. “First, I consulted my family physician about my symptoms. He said that I had a nervous, sensitive stomach. He then sent me to a gastroenterologist, who also believed that the symptoms were related to stress. The gastroenterologist suggested that I needed to relax because it was in my head. Immediately, I thought, ‘Wow!’ I was just a nervous guy who was bringing all this pain on himself. I thought I could deal with it myself.”

Roberts’ journey to multiple gastroenterologists ended in his early 20s. “As a young adult, I was finally able to accept IBS and began to take charge of my own life. That is when I began to roll with the punches and appreciate that I was going to have good and bad days. Now, my symptoms may last for one day, two days, a week, or even a month; however, I eventually feel better. For me, the treasure at the end of the rainbow is that I will feel better, so I roll with it, don’t get so worked up about it, and try to deal.”

Understanding IBS
IBS has been classified a “misunderstood disease” by many health professionals. Leslie Bonci, MPH, RD, American Dietetic Association spokesperson and author of the upcoming American Dietetic Association Guide to Better Digestion, says that IBS is a functional bowel disorder. “The problem is understanding how the gut functions because, from a physical perspective, there is nothing wrong,” she says. “Every x-ray and test administered comes back normal.” She says there are issues that need to be explained when someone is experiencing discomfort. “The fact that IBS patients may tend to have a heightened nerve sensitivity is really what tends to cause the symptoms,” says Bonci.

Symptoms of IBS vary widely from one person to another and often occur with other diseases. The common symptoms associated with IBS include the following:

• abdominal pain
• a bloated feeling
• flatulence (gas)
• diarrhea or constipation
• mucus in the stool

Foods, medications, and even emotions can trigger IBS symptoms. Chocolate, milk, and alcohol may cause constipation or diarrhea, while stress can cause the colon to spasm.

Roberts says that alcohol and fatty foods usually provoke his IBS symptoms. He stays away from gassy vegetables (eg, cauliflower) and rye bread, but, ironically, says that he can stomach broccoli.

Dealing with the symptoms of IBS can be very challenging. “It is a matter of the IBS controlling you or you controlling the IBS,” says Bonci. The two things that drive the process are stress and eating. Eating is unavoidable; it is how people react to and manage stress that can play a large part in how someone’s gut is going to feel.”

Diagnosis Challenges

Diagnosing IBS is often a challenging process that can last several years. Many people who are affected by IBS self-medicate and do not seek medical attention. “If you look at the national rate, 10% to 20% of the population suffers from IBS, and it is more common in women than in men. That does not mean that all of those people actually come in to be seen,” says Martin C. Schulman, MD, associate clinical professor in the department of family and preventive medicine at the University of California, San Diego.

Schulman says that IBS can be classified as mild, moderate, or severe. “People with mild symptoms typically treat with over-the-counter [OTC] medications and never see a doctor. We tend to see the patients who are suffering from more severe symptoms.”

“Other considerations would be preexisting medical conditions such as depression, diabetes, fibromyalgia, lactose intolerance, weight management, and other potential causes for the symptoms, such as inflammatory bowel disease (See Table 1), diverticular disease, and Crohn’s Disease,” says Christine Hurley, RD, CDE, outpatient nutritionist at Crozer Keystone Health System, Springfield, Pa. Hurley adds, “What I have seen in the past is that celia [a deficiency that allows certain sugars to pass undigested in the small intestine] is sometimes missed or overlooked.”

Against the need for additional testing, Schulman says that most of the time he is confident in reaching a diagnosis of IBS. “I will diagnose someone the first visit if he or she meets Rome II Criteria [See Table 2] and lacks worrisome [“red flag”] symptoms or signs such as age of onset >50 years old, family history of colon cancer, nocturnal symptoms, fever, weight loss, and bloody stools,” he says. “Most of my patients are younger. A definitive diagnosis is often easy to obtain without any tests. If the patient responds to treatment, that reassures me that I have made the correct diagnosis, and it is not necessary to do anything else except keep up the treatment.”

Treatments for IBS

There are various treatment options for IBS sufferers to consider. For moderate symptoms, a doctor may suggest fiber supplements, such as psyllium or methylcellulose, and OTC medications, such as loperamide (Immodium), to help control diarrhea or constipation. In some cases, drugs may be prescribed that affect certain activities of the nervous system to relieve painful bowel spasms. If the symptoms include pain and depression, a tricyclic antidepressant (Tofranil, Norfranil) or a selective serotonin reuptake inhibitor (Prozac, Sarafem) may be prescribed.1 [Note: As reported in the November 2002 issue of Today’s Dietitian, Zelnorm was recently approved as the first prescription medication to treat women with IBS whose primary bowel symptom is constipation.]

Another option is to turn to natural remedies, such as relaxation techniques and herbal supplements. “Stress relief is a very important part of IBS,” says Bonci. “Some people find that visual imagery techniques or relaxation techniques can be extremely helpful.”

She says that from an eating perspective, there is often an emphasis on what people are doing wrong. “People immediately begin adding larger amounts of fiber to their diet, and their body does not know how to deal with it. Fiber is critical, but it is a very gradual process,” she notes. Bonci says the key is adding fiber to smaller meals throughout the day. “Eating while rushed is also a big issue for IBS patients. They have kids, so when rushing to soccer or other activities, they shove something in their mouth and walk out the door. It is a recipe for disaster.”

When Roberts realized how IBS was impacting his family, he consulted a dietitian. “After my wife started to say that my condition was ruining our life, I decided to seek a dietitian’s help. I saw two dietitians who both suggested a diet of fiber, reduced fat, and high protein. I found the information that I received useful, in terms of understanding what I was putting into my body.” His overall experience with the dietitian proved valuable. “I actually determined that there were some foods that definitely did aggravate my symptoms. I often find that I may eat the same food one day without triggering an issue, and, the next time, it does.”

In 1987, Roberts decided that there was a definite need for more information about IBS, so he established the IBS Self Help Group, which met semimonthly as a group. “At the time, there was not a lot of information on IBS. The only place to get information was from your physician or from a medical library. Nurse organizations distributed brochures that focused on diet relating to lactose intolerance, but not IBS.”

Today, the IBS Self Help Group is an online organization that helps those affected by IBS realize that they don’t have to cope alone. “Online, we have 14,500 registered members. We see approximately 5 million visitor hits per month, with nearly 50,000 unique visitors,” says Roberts. “From our Web site, it is clear that there are people searching for information for themselves or their family. Even professionals are looking for more information.”

In November 2000, the IBS Self Help Group became more visible in the media when it formed the Lotronex Action Group to help fight against the withdrawal of Lotronex from the market. Lotronex is a drug that is specifically for diarrhea-predominant sufferers. Roberts was faced with an increasing number of women who demanded this drug be reinstated. “Many women expressed their fear of returning to that old life of not being able to partake in social events or to simply go to work at a usual time.”

In spring 2001, the IBS Self Help Group started a petition to the FDA and the pharmaceutical companies demanding access to the medication. “We believed that the drug was safe if dispensed properly to the correct individual,” says Roberts. The end result was the reintroduction of Lotronex in June 2002, with certain restrictions.

Challenges Ahead

Many challenges lie ahead for the treatment of IBS. “Probably the biggest challenge is reassuring my patients that it is nothing worse,” says Schulman. “Now, with the diagnostic criteria and access to data, it is much easier to make an accurate diagnosis of IBS. The next big challenge is getting them to make the changes to control IBS.”

Hurley also recognizes the frustration that many IBS patients encounter. She says the key is to “educate the patient to go in armed to ask what he or she can do about it. Also, the physicians must listen to what their patients are saying to them.”

More importantly, Roberts stresses, “It is important for IBS sufferers to talk to someone about their IBS. The key is for the person to be very open about his or her illness and to not suffer alone.”

To receive a complementary IBS brochure, Irritable Bowel Syndrome: Tips on Controlling Your Symptoms, send a self-addressed, business-size envelope to American Academy of Family Physicians, c/o IBS, P.O. Box 19326, Lenexa, KS 66285-9326.

— Krista Fuller is an editorial assistant at Today’s Dietitian.