IBS: SUFFERING IN SILENCE
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By Krista Fuller
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 persons 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 persons 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
Roberts says that he was diagnosed with IBS at age 15. My symptoms were abdominal
pain, diarrhea, and constipation. I didnt 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
Roberts 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, dont get so worked up about it, and try to
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:
a bloated feeling
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
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 someones gut is going to feel.
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 Crohns 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 Todays
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
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 dietitians 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 dont 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.
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
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 Todays Dietitian.
1. What is irritable bowel syndrome? Available at:
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